FASD Ireland News, Media & Blogs

NEAR FM interview with our CEO Tristan

Fri, 27 Mar 2026 11:44:53 GMT

NEAR FM interview with our CEO Tristan

NEAR FM's Ger Ledden popped into our offices a few weeks ago to speak to our CEO Tristan about all things FASD.

Our CEO Tristan speaks to Marian Herriott at Connemara Community Radio

Wed, 25 Mar 2026 11:00:23 GMT

Our CEO Tristan speaks to Marian Harriet at Connemara Community Radio

Following the shocking statistic from FASD Ireland that 57% of calls in the first quarter of 2026 to FASD Hub Ireland related to children in the 5 to 6 year old age bracket, Tristan spoke to Marian in the weekly Health Section on Connemara Community Radio.

Chair of FASD Ireland Advisory Board Kate FitzHerbert talks to Brian Redmond

Tue, 24 Mar 2026 15:37:25 GMT

Chair of FASD Ireland Advisory Board talks to Brian Redmond on The KCLR Daily

Kate FitzHerbert, Chair of FASD Ireland Advisory Board was delighted to join Brian Redmond in the Studio at KCLR FM to talk about Foetal Alcohol Spectrum Disorder on the KCLR Daily.

The interview recorded on 24/4/2026 show can be listened to below, and begins at 2h 42m 42s.

Our CEO Tristan on Newstalk 'Let Me Explain' Podcast with Seán Defoe

Tue, 24 Mar 2026 13:35:09 GMT

Our CEO Tristan appeared on Newstalk 'Let Me Explain' Podcast with Seán Defo

Click the button below to listen the 21 minute episode.

Our CEO Tristan interviewed on Castlebar Community Radio

Mon, 23 Mar 2026 17:18:18 GMT

Our CEO Tristan interviewed on Castlebar Community Radio

On Thursday 19th March, our CEO, Tristan, was invited onto Castlebar Community Radio on The Chatroom with Angela Faull. FASD Ireland were delighted with the research that had gone into FASD and FASD Ireland after our recent news report that 57% of families who contacted FASD Hub Ireland during the first three months of 2026 are seeking support for children under the age of six who are showing signs of Foetal Alcohol Spectrum Disorder (FASD). Huge thanks to Castlebar Community Radio and Angela for having us. You can listen to the full interview below.

FASD Ireland reports an increase of families with children aged under 6 living with FASD

Fri, 13 Mar 2026 11:19:12 GMT

FASD Ireland has reported that 57% of families who contacted FASD Hub Ireland during the first three months of 2026 are seeking support for children under the age of six who are showing signs of Foetal Alcohol Spectrum Disorder (FASD)

Many of these concerns have only become apparent after children began primary school , when differences in learning, behaviour, and emotional regulation start to emerge.

According to the Health Service Executive (HSE) in 2022, one in ten babies born in Ireland is estimated to have a form of FASD, making it the most prevalent neurodevelopmental disability in the country. Following the Covid-19 lockdowns, patterns of alcohol consumption changed significantly as home drinking became more normalised. During the same period, births in Ireland rose for the first time in several years, reaching over 57,000 births in 2022 according to the Central Statistics Office.

The HSE now estimates that up to 7.4% of the population in Ireland may be living with FASD.

Tristan Casson-Rennie, CEO of FASD Ireland, said the organisation is now beginning to see the expected increase in families seeking support as affected children reach school age.

“The symptoms of Foetal Alcohol Spectrum Disorder often begin to become visible from around the age of five and can be fully recognisable by the time a child reaches ten,” said Casson-Rennie. “What we are seeing now are parents who know something is not quite right for their child but are struggling to find information, diagnosis, and support.”

FASD is a lifelong neurodevelopmental condition caused by prenatal alcohol exposure. No amount is safe for a woman to drink at any stage of pregnancy. Emerging research also highlights the role of paternal alcohol consumption prior to conception.

Recent research led by Professor Michael Goulding at Texas A&M University (2025) has found that alcohol consumption by a father in the 64 days prior to conception can cause epigenetic changes in sperm. These changes may influence the developing embryo and have been associated with:

· Increased anxiety and ADHD-type behaviours

· FASD-like growth defects including reduced bodyweight

· Cranial abnormalities and structural brain changes

The research also suggests that paternal alcohol exposure may predispose children later in life to cardiovascular, renal, inflammatory, or diabetic conditions after the age of 40.

FASD Ireland says these findings reinforce the importance of public awareness about alcohol and reproductive health for both parents.

“Ireland has one of the highest estimated prevalence rates of FASD in the w orld, yet public awareness and diagnostic capacity remain extremely limited,” Casson-Rennie added. “Families are reaching out because they want answers and support. Early recognition and intervention can make a profound difference in a child’s life.”

As children born during the pandemic years begin primary education, FASD Ireland expects more families and schools to come forward seeking help and guidance.

FASD Ireland is calling for:

· Increased national awareness campaigns about the risks of alcohol and conception/pregnancy for both parents

· Improved assessment and diagnostic pathways for children

· Training for teachers and healthcare professionals about FASD

· Sustainable funding for services supporting families affected by FASD

Families and Schools concerned about FASD can contact FASD Hub Ireland, the national information and support service:

�� FASD Hub Ireland: 065 670 3098
�� Website: www.fasdireland.ie

Media Contact:
FASD Ireland
Email: scott@fasdireland.ie
Phone: 065 670 3096

In memory of Alli MacNamara

Mon, 15 Dec 2025 08:32:44 GMT

In memory of Alli MacNamara

FASD Ireland Statement on the Passing of Alli MacNamara

Everyone at FASD Ireland is deeply saddened to learn of the passing of Alli MacNamara from FASD Awareness NI/Oshay’s Brain Domain.

We extend our heartfelt condolences to her husband Brian, her children Reece and Jordan, her family, friends, and all those across Ireland whose lives Alli touched.

In 2022, when we announced our new contact number as our phone line was connected, Alli was our very first caller, not 30 minutes later.

Reflecting on their relationship, our CEO, Tristan Casson-Rennie, shared: “In the past six months I have worked very closely with Alli. We spoke on the phone many times since we launched in 2022, and our main theme was how we could work collaboratively to ensure families could be supported. Earlier this year I was absolutely delighted and honoured to be asked to speak at the very first conference organised by Alli in Lisburn, which was well attended, supported, and covered by the BBC. The conference is only one of the many legacies Alli leaves behind and she will be sorely missed by the FASD community across Ireland.”

Alli was a passionate advocate, a caring champion for families affected by Foetal Alcohol Spectrum Disorder, and a dedicated collaborator. Her warmth, kindness, and unwavering commitment to raising awareness and supporting those impacted by FASD will be greatly missed. During our joint work—especially at cross‑border events and training initiatives, Alli’s compassion, authenticity, and generosity shone brightly.

We mourn her loss together and stand in solidarity with the FASD Awareness NI/Oshay's Brain Domain community as they grieve. Alli’s legacy will live on through her tireless efforts to educate, empower, and support families navigating the challenges of FASD. May her memory continue to inspire us as we carry forward her vital work.

Rest in power, Alli.

Ar dheis Dé go raibh a hanam.

From your family at FASD Ireland.

Budget 2026 Fails People Living with FASD and Ignores Alcohol Related Harm

Tue, 07 Oct 2025 14:42:32 GMT

FASD Ireland responds to Budget 2026

Tristan Casson-Rennie, CEO of FASD Ireland, has today expressed deep disappointment at the Irish Government’s 2026 Budget, describing it as “Failing People living with Foetal Alcohol Spectrum Disorder (FASD) and Ignoring Alcohol Related Harm”.

Echoing the Disability Federation of Ireland’s (DFI) assessment that the Budget is “a betrayal of disabled people, stripping away vital supports, deepening poverty”, Casson-Rennie said “This Budget does nothing to recognise or support the many thousands of people across Ireland living with FASD — one of the most prevalent yet most neglected neurodevelopmental conditions,” he said. “The recent RCSI report, ‘ FASD in Ireland – Wellbeing, Living Experience and the Need for Change ’, clearly shows the challenges faced by individuals and families every day. Yet today’s Budget offers them nothing — no plan, no funding, and no recognition.”

“Once again, the Government has failed to acknowledge the real harm caused by alcohol in our society. Not a single cent of new tax has been placed on alcohol, and there is no mention whatsoever of an Alcohol Related Harm Fund — a measure long recommended by FASD Ireland and Alcohol Action Ireland. Such a fund operates successfully in countries like New Zealand, where it supports prevention, awareness, and early intervention. Ireland could and should do the same,” Casson-Rennie said.

He also criticised the Government’s continued failure to abolish the means testing of carers, calling it “demeaning and unjust.”

“Parents and carers continue to endure almost forensic interrogation just to qualify for a basic state payment — for doing one of the hardest jobs imaginable: staying at home to care for a child or adult with significant needs. It’s indefensible that this continues in 2026,” he added.

Casson-Rennie concluded by calling for urgent political will to address the growing crisis and silent epidemic of FASD in Ireland. With the recent publication of FASD Ireland's research concluded by Royal College Surgeons Ireland, now is the time to act.

“This Budget was a chance to show leadership, compassion, and foresight. Instead, it shows indifference. People with FASD, their families, and carers deserve far better.”

FASD Awareness Month & International FASD Awareness Day 2025: A Landmark Month for Change

Tue, 30 Sep 2025 09:22:31 GMT

FASD Awareness Month & International FASD Awareness Day 2025: A Landmark Month for Change

September 2025 was a transformative month for FASD Ireland, filled with powerful moments of advocacy, education, and connection. As we marked FASD Awareness Month and International FASD Awareness Day on 9th September, we amplified voices, launched critical research, and brought communities together across the island of Ireland.

Launch of Groundbreaking National Research

On FASD Awareness Day, we proudly co-hosted the launch of a landmark research report by the Royal College of Surgeons in Ireland (RCSI) — the first of its kind to provide an evidence-based picture of FASD in Ireland. The findings were stark: FASD is the most prevalent yet least diagnosed neurodevelopmental condition in the country. The report called for urgent action, including:

FASD-specific training across sectors
Clear diagnostic and support frameworks
Dedicated services for assessment and lifelong support

Senator Anne Rabbitte, who received the FASD Champion 2025 Award, delivered a passionate call for systemic change and reaffirmed her commitment to national awareness and support.

FASD in Adulthood: Public Awareness Event in Ennis

Our public awareness event at the Buttermarket in Ennis focused on FASD in Adulthood, engaging employers, HR professionals, and educators. The event highlighted how simple accommodations can create inclusive environments for adults living with FASD.

#LightItRed & Red Shoes Rock

As part of the global #LightItRed campaign, Leinster House was illuminated in red for the second year running — a powerful symbol of solidarity. Supporters across Ireland joined the Red Shoes Rock movement, wearing red shoes and sharing photos to spark conversations and raise awareness.

Introduction to FASD Training – Online & In-Person

Throughout the month, we delivered multiple sessions of our CPD-accredited “Introduction to FASD” training, both online and in-person. These 3-hour workshops, led by CEO Tristan Casson-Rennie, provided foundational knowledge on FASD, its impact, and practical strategies for support. The sessions were attended by parents, carers, educators, clinicians, and social workers across Ireland and Northern Ireland.

Collaborative working: Lisburn Conference

We also participated in a cross-border conference in Lisburn, strengthening partnerships with professionals and families in Northern Ireland. This event, held by Oshays Brain Domain, underscored the importance of all-island collaboration in addressing FASD and ensuring consistent support across jurisdictions.

Looking Ahead

FASD Awareness Month 2025 was a turning point — but it’s only the beginning. At FASD Ireland, we remain committed to:

Raising awareness through education and advocacy
Supporting families and individuals living with FASD
Challenging stigma with compassion and facts
Pushing for policy change and dedicated services

Thank you to everyone who stood with us this September. Whether you attended an event, shared a post, wore red, or simply listened — you made a difference.

Together, we are #FASDStrongerTogether.

FASD Ireland Launches Groundbreaking RCSI Research on International FASD Awareness Day

Wed, 17 Sep 2025 09:43:42 GMT

FASD Ireland Launches Groundbreaking RCSI Research on

International FASD Awareness Day

On 9th September, International FASD Awareness Day, FASD Ireland proudly co-hosted the launch of a landmark research report conducted by the Royal College of Surgeons in Ireland (RCSI), the first of its kind to provide an evidence based picture of Foetal Alcohol Spectrum Disorder (FASD) in Ireland.

This day, marked globally on the 9th day of the 9th month to symbolise the nine months of pregnancy, brought together advocates, researchers, families, and policymakers in a united call for recognition, action, and support for those living with FASD.

A Turning Point for Ireland

The RCSI research marks a pivotal moment in Irish public health and disability policy. It reveals the true scale and impact of FASD, the most prevalent yet least diagnosed neurodevelopmental condition in Ireland, affecting learning, behaviour, and opportunity across the lifespan.

Speaking at the event, Senator Anne Rabbitte, recipient of the FASD Champion 2025 Award, delivered a powerful address, stating: “FASD remains largely invisible in national health and education policies, with no dedicated data collection, diagnostic pathways or specialised services currently in place.”

She highlighted the systemic neglect faced by families: “Professionals across healthcare, education and social services are unequipped to recognise or manage the complexities of the condition.”

The consequences of this neglect are severe: “Individuals with FASD are significantly overrepresented in statistics on homelessness, addiction, mental health crisis and youth suicide, yet their needs remain overlooked.”

Urgent Action Required

Senator Rabbitte described the RCSI report as a “brilliantly important” piece of research, calling for:

• FASD-specific training across healthcare, education, and social care sectors

• The development of clear diagnostic and support frameworks

• The establishment of dedicated services for assessment, treatment, and lifelong support

“Without these measures, Ireland will continue to fail a population living with a preventable but profoundly misunderstood disability.” She issued a strong call to leadership: “There is a responsibility within government and across sectors to understand. Silence is condonance.”

And reaffirmed her commitment: “I will continue to champion this… to deliver that awareness campaign and provide direct support for those living with FASD.”

Prevention, Awareness, and Inclusion

The event also focused on prevention, with new research highlighting the role of both parents in avoiding prenatal alcohol exposure. Senator Rabbitte stressed the importance of early diagnosis and intervention, and the need to educate healthcare professionals to ensure better outcomes.

Buildings across Ireland—including Leinster House, and FASD Ireland’s headquarters—were lit up in red, symbolising solidarity and awareness.

Voices of Experience

The evening concluded with a heartfelt moment as Jacob Casson-Rennie, a young adult living with FASD and a student at the University of Galway, presented the FASD Champion Award to Senator Rabbitte. His presence and story served as a powerful reminder of the living experience behind the statistics.

“All people, especially children, deserve to thrive,” Senator Rabbitte said. “Today is a milestone, a day where research, advocacy and policy come together to deliver the kinds of supports families have long been calling for.”

She closed by thanking all those involved, including the RCSI team, Professor Jolanta Burke, Angela Harper, Professor Faharna Shariff, and the FASD Ireland team:

“Our work is already making a difference, and I have no doubt it will shape a better future for so many families.”

Download your copy of the research

Ennis Young Adult With FASD Hails Impact Of Increased Awareness

Wed, 20 Aug 2025 12:06:54 GMT

Ennis Young Adult With FASD Hails Impact Of Increased Awareness

A young adult from Ennis living with FASD claims increased awareness of the disorder has allowed him to greatly develop throughout his life.

Foetal Alcohol Spectrum Disorder is a condition developed during pregnancy caused by exposure to alcohol and can effect memory and learning.

FASD Ireland, who are based in Ennis, will hold an awareness event in the Buttermarket on September 9th and Director of Operations & Deputy CEO, Scott Casson Rennie’s adopted son Jacob lives with the condition.

Jacob has been telling Clare FM’s Morning Focus that growing up proved challenging without access to the level of support in place today.

Listen back here

Find out more about our event and book here

Irish Government bottle it on alcohol labelling

Thu, 24 Jul 2025 09:20:59 GMT

FASD Ireland notes with concern the Cabinet’s decision yesterday to defer the implementation of health information labelling on alcohol products until 2028.

FASD Ireland notes with concern the Cabinet’s decision yesterday to defer the implementation of health information labelling on alcohol products until 2028. This measure, originally a key provision of the Public Health (Alcohol) Act 2018 and a central recommendation in the HSE’s 2022 Position Paper on the Prevention of Foetal Alcohol Spectrum Disorders (FASD), was due to come into effect in May 2026.

Speaking from FASD Ireland’s Headquarters in Ennis, Co. Clare, Director of Policy and Public Affairs, Mike Taylor said:

“This decision represents a significant setback for public health in Ireland. The delay undermines years of progress and consensus on the importance of providing clear, evidence-based information to consumers about the risks associated with alcohol, particularly during pregnancy.

The HSE Alcohol Programme have worked tirelessly on alcohol labelling in collaboration with many actors in the health and advocacy sphere and we are deeply sorry to see that work, particularly as identified in the Position Paper on FASD Prevention, now kicked to touch in favour of siding with blatant disinformation from the alcohol industry by Government.

“FASD Ireland, alongside over 80 public health and advocacy organisations, has actively engaged with members of the Oireachtas in recent months to support the timely implementation of alcohol labelling. Despite strong support from those who engaged with us, the Government has opted to postpone this critical measure.

“We are concerned that this reversal appears to have been influenced by misinformation regarding the potential impact of labelling on exports. It is important to clarify that the proposed labelling requirements apply only to alcohol products sold within Ireland and would not affect exports. Unfortunately, this distinction has been lost in the noise, in large part due to disinformation from the alcohol industry, and their PR and lobbying apparatuses.

Foetal Alcohol Spectrum Disorder (FASD) is a lifelong, irreversible neurodevelopmental condition caused by prenatal alcohol exposure. Ireland has the third highest estimated prevalence globally, with approximately 1 in 10 babies now being born in Ireland with FASD. Alcohol is a known teratogen that crosses the placenta and can affect foetal development.

“Our position has always been clear: people have the right to accurate information so they can make informed decisions, especially when it comes to alcohol and pregnancy. This delay risks prolonging public misunderstanding and may contribute to continued harm. Alcohol can harm a developing baby even before pregnancy is confirmed. That’s why no amount of alcohol by either parent is considered safe in the six weeks before conception, at conception, or throughout pregnancy.”

FASD Ireland urges the Government to reconsider this decision and to reaffirm its commitment to evidence-based public health policy.

ENDS

First National Foetal Alcohol Spectrum Disorder (FASD) Conference held

Tue, 10 Jun 2025 11:38:09 GMT

First National Foetal Alcohol Spectrum Disorder (FASD) Conference held

HOTEL Woodstock in Ennis was the setting for the inaugural FASD Ireland National Conference last Thursday, 22nd May. The conference titled ‘FASD in Ireland’ was organised by the Ennis based FASD Ireland – the national

organisation supporting people living with Foetal Alcohol Spectrum Disorder, their families/caregivers and supportive professionals.

The conference, which was attended by people living with FASD and their families, as well as professionals from Education, Health and Social Care and Criminal Justice backgrounds heard from a wide variety of keynote speakers and expert panels.

Dr. Aisling Sheahan, HSE National Lead for Alcohol, Mental Health and Wellbeing gave a brief overview of previous public health campaigns around alcohol and pregnancy. She reiterated the HSE advice that no amount of alcohol is safe during pregnancy.
Prof. Raja Mukherjee MBE, a Consultant Psychiatrist working as the clinical lead for Adult NDD & FASD at the UK’s National FASD Clinic, gave an overview of the diagnostic process and how people with FASD need to have the same access to diagnosis and specialist services such as those with autism and ADHD. Prof. Mukherjee outlined that he did not accept the country’s current position on the lack of standard diagnostic regime said; “If you had a patient in front of you with the clear markers of Down Syndrome, you would not refuse to diagnose them. FASD should be no different”.
Prof. Jolanta Burke of the RCSI Centre for Positive Health Sciences shared some of the early findings from her ongoing research on theexperiences of being a carer of a person living with FASD. She revealed that 25% of carers surveyed reported that they found FASD Ireland support groups useful, while a further 25% felt that that they had no resources for supporting or obtaining diagnosis of FASD.
Prof. Farhana Sharif, Consultant Paediatrician supported Prof. Mukherjee’s assessment that it is unacceptable that Ireland does not have standard criteria for diagnosis and support and ran through some possible interventions that healthcare professionals could make to support people who are suspected of living with FASD in their care while we await for a diagnostic regime to be implemented.
Dr. Denis Lamblin, CEO of SAFFrance, a French-based FASD prevention organisation also gave a presentation on the successful work that they are doing in France to reduce the prevalence of FASD through school seminars, partnerships with bars and restaurants, and public awareness campaigns on alcohol and pregnancy.

Speaking following the event, Scott Casson-Rennie and Cillian Flynn, the co-convenors of the conference said; “It was an absolute honour to be asked to organise the FASD Ireland’s first conference. We have both had experience of organising these types of events in the past, however, each event is always different.”

“We were blown away by the day itself and have subsequently been blown away by the feedback we have received since. Whilst we return to our day jobs, we are also beginning to think about next year, and we look forward to ensuring that the conference in 2026 exceeds the impact of 2025.”

CEO of FASD Ireland, Tristan Casson-Rennie added, "I’m absolutely delighted with the success of our first conference. It was clear from the engagement on the day that there is a strong and growing appetite within

the community for greater support from the State in addressing FASD. We were truly bolstered by the overwhelming support shown for the work we do. Support that encourages us to continue making a meaningful difference in the lives of families through expert advice and ongoing care.

What came through loud and clear from medical and academic professionals alike is the urgent need for standardised criteria for diagnosis and a consistent, accessible framework of support systems. It’s now more

evident than ever that national implementation of these measures is essential if we are to ensure that no one affected by FASD is left behind."

Sam Gardiner RIP (2002 - 2025)

Mon, 09 Jun 2025 12:04:04 GMT

Sam Gardiner RIP (2002 - 2025)

FASD Ireland, the national organisation for people living with Foetal Alcohol Spectrum Disorder (FASD), their families/caregivers and supportive professionals are sending solidarity to their sister organisation in the UK, National FASD and to the family of Sam Gardiner, following his untimely passing on 29th May.

Gardiner, who was a contestant on BBC’s ‘Race Across the World’ in 2020, died from his injuries following a car accident on May 29th. He was 24.

Speaking from their Head Office in Ennis, CEO of FASD Ireland, Tristan Casson-Rennie said; “on behalf of all here at FASD Ireland, I want to extend our sincere condolences to the family of Sam Gardiner. His parents Jo and Andrew, his

brothers William and Charlie, his stepmother Justine, and all who knew and loved him. I also want to send our solidarity to all in our sister organisation in the UK, National FASD.

Sam was an incredible role model within the FASD community, and although he has left this world far too soon, his sad passing has ignited a public conversation around FASD; the strengths possessed, and challenges faced by people living

with the condition. Sam showed us all how to dream big and to live in full colour. Ár dheis Dé go raibh a Anam dílis.”

Following his death, a JustGiving page has been set up in Sam’s honour. His mother, Jo said; “If some good comes of this tragedy, it will be that FASD is better understood”. FASD is a lifelong neurodevelopmental condition resulting from

prenatal alcohol exposure. It is the most prevalent neurodevelopmental condition in Ireland, yet FASD is not recognised by the State as a disability and there is currently no standard pathway to diagnosis or framework of support.

FASD Ireland operates FASD Hub Ireland, an expert advice and advocacy line for families living with FASD and professionals supporting them. It operates Monday to Friday 10am to 4pm and is available by calling 065 670 3098.

FASD Ireland response to Minister Butler's recent comments about ADHD and Autism

Tue, 15 Apr 2025 15:43:33 GMT

FASD Ireland response to Minister Butler's recent comments about ADHD and Autism

FASD Ireland fully understands the public anger that has been expressed toward the recent statements made by Minister of State for Mental Health and Older People, Mary Butler T.D. and publication of a book on issues pertaining to the prevalence of ADHD and Autism (ASD) by an individual.

We recognise that the Minister’s remarks without context are offensive to the neurodiverse community. ADHD is the most diagnosed co-morbid condition of Foetal Alcohol Spectrum Disorders (FASD), present in 70% of diagnosis, with autism presenting very similar symptoms to FASD, and co-occurring in around 1.5% of diagnosis of FASD.

We understand and appreciate how recent debate of the prevalence, diagnosis and even existence of ADHD and ASD can be deeply frustrating for the people who live with these two conditions. Those that have been campaigning for the last 20 years have made enormous strides in that time and we would never want to go back to an Ireland where people feel unseen and unsupported. For people living with FASD in Ireland, that experience of 20 years ago is our live reality today.

As members of an interconnected community of people living with neurodevelopmental conditions, we welcome public discussion at all levels about the barriers that people have faced in our society in the past and continue to contend with today. However, as the national organisation for the largest cohort of people living with a neurodevelopmental condition in this country, we are disappointed but not surprised to have been overlooked from this discussion.

FASD is the most prevalent neurodevelopmental condition in Ireland, yet there is no standard criteria for diagnosis for people living with the condition. There is no framework of support from state agencies, including CDNTs, CAMHs, Adult Mental Health Services, or the NCSE in education. The issue of underdiagnosis and misdiagnosis being discussed in the public domain is very welcome, however, for people who have no access to diagnosis, their living experience and the advocacy of their representative organisations are completely removed from this discussion; locked out of decision-making processes, there is no seat at the table where issues of concern to the FASD community are discussed at a State level.

Everyone living with neurodevelopmental conditions in this State should have access to supports and accommodations and we stand unequivocally in solidarity with our fellow neurodiverse community who have faced questioning of the validity or even existence of their conditions in recent days. However, for people living with FASD it is a not merely barriers to diagnosis or outdated protocols but diagnostic protocols that simply do not exist in this State. People living with FASD face every conceivable barrier in accessing supports and accommodations at home, school, further education, at work and throughout the life course.

FASD Ireland, people living with FASD, their parents or carers are all excluded from having a voice at the only HSE body that exists to discuss FASD, the Expert Advisory Group on FASD Prevention. There is not one single voice of anyone with living experience of FASD represented on the EAG.

Since the beginning of this Government term in January and subsequent to the appointment of Ministers, policy related to FASD which previously sat with then Minister of State for Disability, Anne Rabbitte, has no line Minister in Government and 28 Parliamentary Questions from a myriad of TDs who support our work have gone completely without answer.

From a day-to-day perspective, families who are crying out for support are left completely abandoned by this State and have only FASD Ireland to turn to. It is our privilege to support the FASD Community in this State every day in a fight for basic recognition, and we spend hours writing emails, policy papers, and submissions for one basic reason. FASD exists.

Through the work of FASD Hub Ireland, we work at the coalface of this dearth of service provision and what it means for families the length and breadth of this country. When there is nobody else for these families to turn to because of a lack of support and accommodation, we are there. And we will be there every day.

Silent epidemic of foetal alcohol spectrum disorder 'coming down the road at us fast and furiously'

Mon, 31 Mar 2025 20:43:28 GMT

Silent epidemic of FASD 'coming down the road at us fast and furiously'

The Government is being urged to recognise foetal alcohol spectrum disorder as a disability by a support group which warns it is a silent epidemic “coming down the road at us fast and furiously”.

In recent answers to parliamentary questions about the disorder, Minister of State with responsibility for disabilities, Hildegarde Naughton, said that FASD is not deemed a disability in Ireland and said responsibility for it falls under the Department of Health’s (DOH) Health and Wellbeing unit.

She added: “As a result, the services needed to address issues around FASD are primarily found within the remit of DOH (Department of Health). The DOH currently have the remit over the Expert Advisory Group on FASD directly relevant to the question posed by the Deputy, therefore this is a matter for the office of the Minister for Health.” However, in separate responses, Minister for Health Jennifer Carroll McNeill said that responsibility for the area lies with the Department of Disabilities Children and Youth Affairs.

According to figures published by the World Health Organisation in 2017, it is estimated that approximately 600 babies are born each year in Ireland with the syndrome. Ireland ranked third out of 187 countries for prevalence of FASD, behind South Africa and Croatia.

However, the HSE said in a briefing document in 2022 that the prevalence of FASD in Ireland is estimated at between 2.8% and 7.4% of the population. It added that the best available evidence estimates that about 600 Irish babies are born each year with Foetal Alcohol Syndrome, “with a further 9-10 times this number of babies born annually in Ireland who have other Fetal Alcohol Spectrum Disorders”.

It is also estimated that up to 380,000 people with FASD are currently living in Ireland.

Among the indicators of FASD are ADHD, low body weight, poor co-ordination, poor memory, attention difficulties, difficulties in school (particularly around maths), and learning disabilities.

Chief executive of FASD Ireland, Tristan Casson-Rennie, is calling on the government to take action on designating FASD as a disability.

Describing it as Ireland’s silent epidemic, Mr Casson-Rennie said: “It is coming down the road at us fast and furiously and we need to get supports in place to support everybody who lives with the condition.” He said that previous Minister for Disabilities, Anne Rabbitte, had been supportive but said this has not continued into the current government.

Mr Casson-Rennie said that while people with FASD are getting help from health and disability services for numerous reasons but not specifically for FASD.

He said: “For example, people will be getting diagnosed with a co-morbid condition of ADHD and getting support for ADHD but nobody is looking at what the primary cause is.” He continued: “We need to look at how we get all the departments to recognise FASD. This is not a single department’s responsibility. This is the responsibility of welfare, health, public health, disability, youth, and justice. All those departments need to recognise FASD.” “This government was elected on a ticket of support for people living with disabilities and this message that is coming out from both Hildegarde Naughton and Jennifer Carroll McNeill is that they are going to pick and choose which disabilities they will accept as a disability.” He said that the reply by Minister Naughton that Ireland does not recognise FASD as a disability is the first time that has been put on record by the government.

He described it “as shameful that Ireland does not recognise FASD when there is so much progressive work going on around the world.” He said up to 3,000 calls have been received to the FASD national helpline in the two years since it was set up in April 2023.

Last year, Dr Mary O’Mahony, HSE Cork & Kerry, told the Irish Medical Organisation’s annual general meeting that evidence indicates that during 2021 some 526 babies were born in Ireland who were clearly affected by FASD.

You can read the original article by Ann Murphy on the Irish Examiner website .

BLOG POST: 9TH INTERNATIONAL RESEARCH CONFERENCE - SEATTLE, WA

Mon, 31 Mar 2025 15:32:38 GMT

BLOG POST: 9th International Research Conference - Seattle, WA

In this Blog post - our Policy & Research Coordinator, Rob O'Connell shares his experience of attending the event.

I was privileged to attend the 9th International Research Conference on Foetal Alcohol Spectrum Disorders, Research, Results and Relevance: Integrating research, Policy, and Promising Practice Around the World. The conference was held at the Hyatt Regency hotel in Seattle, Washington, U.S.

The conference was attended by over 300 guests, including; Researchers, Health Care Professionals, FASD Experts, Parents/Care Givers and of course Self Advocates/Advocates of people living with FASD. For my first time in America, it was certainly a whirlwind of a week! I went to this conference which was in fact my second specifically about FASD.

I was just as excited as 2 years ago when I attended the Salford Conference. My plan was to learn as much as possible to bring back to the team and share the knowledge with the team which we could then use with FASD Ireland and support people with FASD living in Ireland.

The conference ran over five days, and proved to be invaluable to us as an organisation, with so many networking opportunities I had the pleasure of speaking with so many hardworking and interesting people who all play such a vital role in the global FASD community.

The week 'started' in the middle of the week! With session on Wednesday 19th March and the theme 'FASD and the Justice System'. Key takeaways from the morning session include:

Testing for Executive and Adaptive Functioning is much more important than testing for IQ as we know people with FASD can have quite a high IQ but dysfunction in the domains of Executive and Adaptive Functioning can result in “the perfect storm” for committing an offence.
Brain Imaging and highlighting the extent of damage alcohol exposure causes to the brain is being used as hard evidence in U.S. courts.
Canada have created an FASD Court , which is providing diagnosis for youths prior to sentencing resulting in a full assessment of the child and more suitable sentencing being put in place that suits the needs of the person instead of “setting the person up to fail”. The court has found success from being non-judgemental, taking the birth mother being affected too into account and also having an understanding the issues facing those who support the youth.

Key takeaways from the afternoon session include:

Neuropsychological testing is to be the first step in diagnosis.
Adaptive assessment is critically important, assess if the person being assessed can do it independently without any prompting or questions.
In supporting the child the environment around the child has to change not the person.
Professionals working in defence have capped the age 25 and under as being a “youth” due to this being the age a neurotypical brain will generally have matured by.
In the case of FASD, age does not matter Suggestibility and gullibility can occur.
People with FASD can have a “Cloak of Competence” coming from an ability to mask and learn from other people. However even though this is the case there is a lack of an in-depth understanding of risk awareness and poor social intelligence.

On Thursday 20th March we attended the pre-conference day on Navigating Stigma with Experiences and Evidence: Moving from Discussion to Action. Thursday was all about stigma! It was an interactive day with lots of group discussion work which was also really valuable to network and get to know people! We talked about the strengths of people with FASD including perseverance, connection and empathy as well as how the dominating message in the U.S. around FASD is dehumanising so we need to look for what people with FASD can do not at the deficits.

In the group sessions, we were asked to brainstorm in groups actions that we could each take to tackle stigma around FASD at the Individual, General Public and Systemic levels. We compared what had worked well in other stigmatised conditions like HIV/AIDS and suicide and how they helped to raise awareness globally and subsequently destigmatise these areas that were once so heavily stigmatised.

Friday 21st March was the first full day of the Research Conference, the days was still reflecting on the previous day in that much of the research being presented and that has been completed is further destigmatising FASD due to creating a better understanding and raining a higher level awareness of the condition in all areas of society from the professionals who diagnose the condition to the people who support those living with FASD to those living with FASD. The next 3 days were each divided into plenary session and breakout sessions with such advanced and valuable information being shared including:

A full breakout session the advancements Victoria and New South Wales, Australia have made in providing diagnosis and aftercare for people with FASD in their FASD Clinics as well as the impressive progress that has been made by the Australian Government through policy change and support.
FASD and Autism was an interesting topic discussed and how the needs of the children can be comparable in some contexts but there is a need for ASD and FASD specialists to be cross trained to fully understand the differences between both.
There were some really moving talks over the weekend from people with direct experience of either living with or caring for somebody with FASD. Friday afternoon opened up a can of worms as Carl Young spoke about his struggle with various conditions at mid-life due to his PAE.
Finishing with a brief overview of the international perspective on what is going on in Mexico, Poland and Kenya in relation to FASD. It was really interesting to hear from these different perspectives and to get a better understanding of what is going on in other countries other than Ireland, and other English speaking countries who, let’s face it, are a lot more ahead of us! But one thing is for sure, we ARE all or HAVE all faced the same difficulties on our journeys.

Saturday 22nd March was all about research! My favourite! It included an overview of some of the recently Collaborative initiative on Foetal Alcohol Spectrum Disorders ( CIFASD ) research projects. These projects are international with researchers from all over the world working on them but most of the research is coming out of the U.S. and Canada. CIFASD has over 400 publications and some of the research discussed included:

Cellular and molecular mechanisms underlying alcohol-induced congenital heart defects in a zebrafish model from Olivia Weeks.
microRNAs as biomarkers of exposure and risk for neurodevelopmental outcomes from Amanda H. Mahnke
Effects of prenatal alcohol exposure on self-report of medical illness later in life from Claire D. Coles
Using novel brain imaging tools to better understand development in youth with FASD.
BRAIN-online: An online assessment of cognition and behaviour in FASD from Sarah Mattson
Using 3D imaging to identify FASD-associated facial dysmorphism across the lifespan from Michael Suttie
Comparison of methods for physical evaluation of dysmorphology in FASD from Miguel del Campo.
Combined transcranial direct current stimulation and cognitive training as an intervention for children and adolescents with FASD from Jeffrey Wozniak.
Extending access to care for people with FASD across the lifespan using smartphone and web applications from Christie L. M. Petrenko and Christian Tapparello.

Saturday’s lunch was spent listening to SAF France give a presentation on How to change legislation to make the fight against FASD a National Public Priority by French MP Perceval Gaillard and SAF France (the French organisation for FASD).

The afternoon was spent listening to more valuable information on the specialists experiences of FASD clinics in relation to Speech and Language Therapy, Assessment tools and how the clinic can work with the government. I also attended an interesting session on the Genetics associated with FASD.

The last and final day, Sunday 23rd March was probably one of the interesting talks I have ever been at, Paternal drinking and the epigenetic influences on mitochondrial function, child health, and FASD by Michael C. Golding. His research considers the paternal contributions to health outcomes of the child but not just through alcohol exposure but to everything including other substances, stress and diet. Essentially how the environment of the father will result in positive or negative outcomes post conception and as a general thought;

Physically and Mentally Healthy Parents = Physically and Mentally Healthy Children.

I also attended a session given by some parents and carer’s of children living with FASD and it was quite insightful to have their experiences shared. There was also a crew from University of Salford who attended, with Dr Alan Price presenting the Salford parents and carers education course called SPECIFIC .

The day finished with some more interesting chat about the difficulties people with FASD can go through as well as the interesting research being done, modifiable lifestyle factors to support neurodevelopment in individuals with FASD. And last but not least the famous Starfish awards were presented with Leanna from South Africa taking home the prize thanks to some very inspiring work she has been doing in South Africa for quite some time as a paediatrician in an FASD clinic in South Africa!

The conference went super and I really enjoyed it! the days were long but there was so much valuable information learned and we met so many amazing people. The professionalism from all the staff at FASD United is also worth a shoutout and may put us under a bit of pressure to perform to their standards on 22nd May in our first FASD Conference .

OVER 9,000 PEOPLE ESTIMATED TO BE LIVING IN CLARE WITH UNDIAGNOSED FASD

Tue, 11 Mar 2025 12:05:50 GMT

Clare County Council has heard calls for training on recognising FASD to be included in the curriculum for third level education.

CLARE FM - 11 March 2025

Clare County Council has heard calls for training on recognising FASD to be included in the curriculum for third level education. Upwards of 9,000 people are thought to be currently living with the disorder in Clare, despite not receiving a full diagnosis of the condition.

7.4% of the Irish population are estimated to be living with FASD, this equates to approximately 380,000 people across the country with 9,467 of those residing in Clare. Given at least one child in every mainstream classroom will live with the condition, calls have been made to ensure a module on neurological disorders is delivered as part of teacher training.

Director of Policy and Public Affairs at Ennis based FASD Ireland, Mike Taylor, claims the government to this point has failed to support those affected.

At present, Ireland is the only country in Europe which doesn’t acknowledge FASD as a disability. The disorder is the most prevalent Nuero-developmental disability and affects a greater number of people than autism, cerebral palsy and down syndrome combined.

CEO Tristan Casson-Rennie, claims there is a misconception within government that hospitals will be overwhelmed should the condition be officially recognised .

Four Clare councillors currently sit on the HSE Regional Health Forum West, while a number of others hold positions on school boards.

Shannon Banks Sinn Féin Councillor, James Ryan, says Clare holds a unique position from which it can incite change.

Full interviews with Tristan Casson-Rennie, Mike Taylor and Councillor Jame Ryan available from Clare FM below.

Tristan Casson-Rennie, CEO FASD Ireland speaks to Clare FM

Mike Taylor, Director of Policy & Public Affairs FASD Ireland speaks to Clare FM

Councillor James Ryan (SF) speaks to Clare FM

CORK EAST TD RAISES NEED FOR DIAGNOSIS AND SUPPORT FOR PEOPLE LIVING WITH FASD IN DÁIL

Thu, 27 Feb 2025 16:22:40 GMT

CORK EAST TD RAISES NEED FOR DIAGNOSIS AND SUPPORT

 FOR PEOPLE LIVING WITH FASD IN DÁIL

CORK East Social Democrats’ TD Liam Quaide has this week raised the need for Government to recognise Foetal Alcohol Spectrum Disorder (FASD) as a disability and to progress with standard criteria for diagnosis and support for people living with the condition.

Addressing the Dáil on Tuesday evening’s statements on disability, Deputy Quaide told the House; “I want to mention the importance of recognising Foetal Alcohol Spectrum Disorder as a disability and to progress with standard criteria for diagnosis and supports. Foetal Alcohol Spectrum Disorders are estimated to affect up to 7.4% of the population and are associated with lasting physical, mental, educational, social and behavioural difficulties. They are a serious neurodevelopmental condition and there is a great deal of work to be done in prevention, diagnosis, treatment and supports.”

Deputy Quaide, who is filling in for Party Leader, Deputy Holly Cairns, as Disability spokesperson during her maternity leave, concluded by saying; “The former Minister of State for Disability, Anne Rabbitte, committed to supporting the aims of FASD Ireland and I hope that the current Government will honour that.

Speaking from their Head Office in Clare, Mike Taylor, Director of Policy & Public Affairs at FASD Ireland said; “We are very grateful to Deputy Quaide and to the Social Democrats for highlighting the need to progress with the recognition of FASD as a disability and to put in place standard criteria for diagnosis and support. FASD is the most prevalent neurodevelopmental condition in this country, which the HSE estimates that roughly 6,000 babies a year are born with. Despite this incredibly high prevalence, the State has consistently failed people with FASD and their families in the past by failing to provide diagnosis and support. FASD Ireland are here to take the fight for recognition for people living with FASD and their families and we are very grateful to have the support of elected representatives like Deputy Quaide and his Party to achieve the recognition of FASD as a disability and progressing with standard criteria for diagnosis and support. As the Deputy pointed out in his contribution, we engage constructively with Government and look forward to meeting with the new Minister for State for Disability, Hildegarde Naughton, in the near future.

“For far too long, people living with this extremely prevalent condition have had no access to necessary supports in order to have the best quality of life that they can have and I’m sure as a clinical psychologist for many years, Deputy Quaide would have seen this in his own practice, just like the many educational, health and social care professionals that have contacted us for support since FASD Ireland was set up in 2021.

For anyone living with FASD, their families, caregivers or professionals dealing with people living with this condition, FASD Ireland is here to support you and provide advocacy on your behalf. Our confidential phone support service is available at 065 670 3098 Monday to Friday from 10am to 4pm and information is available on our website located at www.fasdireland.ie”.

FASD Ireland - Statement on the Incoming Government

Wed, 22 Jan 2025 16:22:36 GMT

FASD Ireland Statement on the Incoming Government

NEW GOVERNMENT MISSES THE MARK WITH RECOGNISING IRELAND’S MOST PREVALENT NEURODEVELOPMENTAL CONDITION AS A DISABILITY – BUT THE DOOR IS LEFT OPEN

FASD IRELAND, the national organisation supporting people living with Foetal Alcohol Spectrum Disorder (FASD) and their families has congratulated incoming Taoiseach Mícheál Martin T.D., and incoming Tánaiste Simon Harris T.D.

“We would like to warmly congratulate An Taoiseach, An Tánaiste and their Government as they take office today. We have worked closely with our allies in Government and in Opposition in the previous Dáil and we look forward to working closely with the allies across this new Dáil to recognise, diagnose, and support people living with FASD, which is Ireland’s most prevalent neurodevelopmental condition. We will write to the Taoiseach, incoming Ministers for Health, Disability & Children, Justice & Domestic Affairs, and Education in the coming days to seek meetings that will progress public policy related to FASD and we look very forward to building positive and engaging relationships going forward.

“It is unfortunate and regrettable that no concrete commitments were set out in this Programme for Government to recognise FASD as a disability and to move forward with adopting standard criteria for diagnosis and support of FASD. As people may be aware, FASD is Ireland’s most prevalent neurodevelopmental condition. The HSE estimated in 2022 that up to 7.4% of our population live with FASD, which is just over 380,000 people. During the Programme for Government negotiations, FASD Ireland engaged with every single negotiator on our key asks for the Programme for Government, so it is disappointing not to see any strong commitments made to continue the tremendous work of Minister Anne Rabbitte in recognising FASD and introducing standard criteria for diagnosis and support.

“Nevertheless, we are hopeful, and we welcome a number of measures proposed. We believe that plans to regulate CAMHS is absolutely the right thing to do. The independent governance of CAMHS teams is an unacceptable practice that must be ended, and CAMHs must be brought in line with the rest of the Health Service to accept appropriate referrals and support service users for the conditions that they live with. We also strongly welcome the full implementation of the EPSEN Act, and we hope that the incoming Minister for Education and Minister for Children will work closely with ourselves and other key stakeholders to ensure that every child is supported, and none are failed by the system, to keep them in education and ensure that their additional needs are fully met.

“We welcome the strides made on better supporting people with disabilities throughout the State. However, as FASD is not a recognised disability, many of these proposed measures are completely inaccessible for people living with FASD. We need the Government to formally recognise FASD as a disability, which we call on them to do as a matter of priority.

“We also strongly welcome the Government’s commitment to continually review the number of conditions babies are screened for. Despite the fact that 1 in 10 babies are born with a form of FASD in this country, according to the HSE, there is no routine screening for the condition at any stage from birth to adulthood. FASD affects our country cross-sectionally, and we firmly believe that all babies born in the State should be screened for Foetal Alcohol Syndrome (FAS), and for wider prenatal alcohol exposure. In the range of tests a newborn baby currently receives, we screen for MSUD, a condition that affects 1 in every 155,200 babies, yet we don’t screen for FAS, which the HSE states approximately 600 babies are born with every year. This needs to change and the HSE need to include FAS as a condition that they screen for during the neonatal battery of tests.

“Despite its shortcomings, we acknowledge the good faith with which this Programme is presented, and we look forward to working with the incoming Government to proceed with the recognition of FASD as a disability and the adoption of a standard criteria for diagnosis and support.”

Lobbying 2024 wrapped

Sun, 29 Dec 2024 16:04:56 GMT

As we celebrate the New Year, we thought it would be good to look back on 2024.

As we celebrate the New Year, we thought it would be good to look back on 2024, particularly our engagement with Deputies, Senators and Ministers. We have produced this short video review of our lobbying during the year.

We look forward to meeting with new Deputies, Senators and Ministers when the new Government is announced in early 2025.

Our sincere thanks to everyone who took the time to meet with us throughout the year, and supporting us in our work to champion people living with FASD.

Avoid the risk of FASD to your baby over the holiday season

Tue, 10 Dec 2024 14:55:56 GMT

Avoid the risk of FASD to your baby over the Holiday season.

FASD Ireland , the national organisation based in Ennis, County Clare, supporting people and their families living with Foetal Alcohol Spectrum Disorder, have launched their 2024 Christmas and New Year campaign.

The HSE currently estimates that up to 7.4% of the population live with FASD which is associated with a range of lifelong physical, mental, educational, social, and behavioural difficulties. FASD is Ireland’s most prevalent and only preventable, neuro-developmental disability. FASD is Ireland’s silent epidemic, affecting one in ten babies born today.

FASD Ireland wants everyone to enjoy the holiday season, however, please to avoid the risk of FASD to your baby, please remember that NO amount of alcohol is safe to drink in the six weeks before conception or at any time during pregnancy.

Tristan Casson-Rennie, CEO of FASD Ireland said, “Ireland has a an alarmingly high prevalence of Foetal Alcohol Spectrum Disorder. In the past it would have been considered acceptable to drink a glass of Stout or a Brandy – it would even have been deemed safe for Mum and Baby. However, we know today from scientific research that prenatal alcoholexposure can cause irreversable life long brain damage and other challenges in a developing baby.”

He continued, “Launching our Christmas and New Year campaign provides essential information to anyone who may be thinking about starting a family over the festivities. It is important that everyone knows about the risks associated with just one alcoholic drink if they are planning to have a baby. Alcohol and pregnancy never go together.”

You can find out more about Foetal Alcohol Spectrum Disorder and FASD Ireland at www.fasdireland.ie. You can also get free and confidental help and support from FASD Hub Ireland Monday to Friday 10am until 4pm – 065 670 3098 or online: www.fasdhub.ie

Leinster House goes red for World FASD Awareness Day 2024

Tue, 10 Sep 2024 11:10:00 GMT

World FASD Awareness Day 2024 coverage - Leinster House lights up red to support people living with FASD

CEANN Comhairle, Deputy Seán Ó Fearghaill and Cathaoirleach of Seanad Éireann, Senator Jerry Buttimer will illuminate the Kildare Street façade of Leinster House this coming Monday, 9th September to mark World FASD Awareness Day 2024. Foetal Alcohol Spectrum Disorder (FASD) is a lifelong neurodevelopmental disability that occurs as a result of prenatal alcohol exposure.

CEO of FASD Ireland, Tristan Casson-Rennie commended the move, saying; “FASD is Ireland’s most prevalent neurodevelopmental disorder, and it is long beyond time that the State starts to recognise the significant epidemiology of FASD in Irish society. We have learned from replies by the HSE to recent Parliamentary Questions that they estimate one in every ten babies born in Ireland today will live with FASD, with a tenth of those born with the most severe form of FASD, requiring lifelong support and care. We must start a national conversation about FASD in Ireland and the harms of prenatal alcohol exposure. Every year that ticks by where we as a State are failing to discuss FASD openly and honestly is another year that approximately 380,000 people who live with FASD in Ireland and their families continue to go without support. It is vital that everybody who works in health and social care, and education settings in particular get trained up on FASD, how it effects the people who live with it, and what management strategies and accommodations can be put in place to make schools, hospitals and everywhere in between more FASD inclusive. We all have a part to play when it comes to FASD, for our part, FASD Ireland provides free education to all teachers, SNAs and SENCOs who are working within our education system, and we offer a myriad of training to the HSE, CAMHS, TUSLA, the NCSE, An Garda Síochána and other agencies of the State as well as the private sector. We support the families of people living with FASD through our non-judgemental peer support telephone line and through in-person and online follow-up sessions. FASD Ireland provides advice and support to those families where no State agency can or will, and a listening ear after many doors have been repeatedly shut in their faces. To that end, we then fiercely advocate for those families with legislators and key decision makers, speaking truth to power in the halls of Leinster House.”

He continued; “Ireland currently has no statutory diagnostic criteria, no diagnostic pathway, and no recognition of FASD as a disability. It is Ireland’s silent epidemic.”

Commenting further on the move to mark the occasion, Mike Taylor, Director of Policy & Public Affairs at FASD Ireland said; “this represents the first time that the Houses of the Oireachtas have recognised World FASD Awareness Day, which is very fitting given that this is the first year a national organisation with an FASD remit has been State funded.

FASD Ireland received funding of €200,000 this year from the Minister of State for Disability, Anne Rabbitte TD. We are seeking to increase that funding to €1.2 Million next year, which we have included in our Pre-Budget Submission, which was launched recently. Our Pre-Budget Submission also calls for investment into indigenous research into FASD in Ireland by the Centre for Autism & Neurodevelopmental Research (ICAN) at the University of Galway and for a national FASD awareness programme to be piloted to all Transition Year cohorts at every secondary school, with a view to rolling out training across the school system over the coming years. We’re aware that all of these things cost money to do. The total cost of our Pre-Budget Submission would come to just under €1.4 Million, however we propose to make this cost neutral by calling on the Government to establish a ringfenced Alcohol Related Harm Fund, funded through a levy imposed of 1% on-trade and 2% off-trade on the existing VAT paid on alcohol by the consumer.

Taylor went on to explain; “The levy as we have proposed it would ringfence around €80,000,000 a year from the existing alcohol tax-take by the exchequer. It would fully fund several alcohol related harm services like FASD Ireland, cancer services, addiction support, and various medical services. This alcohol levy is a cost recovery mechanism. The high expense of issues linked to alcohol makes it very important to identify areas for initiatives in harm reduction and support. The introduction of the levy can mobilise the concept of harm as a lever to involve the alcohol industry in efforts to reduce the harm from the use of its product. When a product such as alcohol causes harm that impacts large swathes of the population (estimated 2.8% -7.4% of Ireland living with FASD) its critical to consider accountability of the industry for adverse health outcomes. According to the Alcohol Market Review from the Health Research Board in 2022, the societal cost of alcohol use estimates range from €2.4bn to €3.7bn per year.”

Clare FM interview - FASD Awareness Day 2024

Mon, 09 Sep 2024 10:53:05 GMT

Morning Focus with Alan Morrissey - Alan interviewed our CEO Tristan on World FASD Awareness Day 2024

Temporary suspension of FASD Ireland services

Fri, 02 Aug 2024 13:03:02 GMT

Temporary suspension of FASD Ireland services

Statement from FASD Ireland CLG - Friday 2nd August 2024

Friday 2nd August is a very sad day for FASD Ireland as we are forced to suspend services that support people living with FASD across Ireland.

We hope to resume our services as soon as the allocated funding is released.

We would like to sincerely thank all Service Users, Members of the Public, Oireachtas Members and Stakeholders for your kind ongoing support at this time. We are particularly grateful to have the unwavering commitment of Minister of State for Disability, Anne Rabbitte TD.

Our website continues to be available for advice and signposting: www.fasdireland.ie

For any enquiries - please contact office@fasdireland.ie

Tristan Casson-Rennie
Chief Executive Officer
FASD Ireland CLG

Our reaction to the recent report of the Inspectorate of the Department of Education

Wed, 26 Jun 2024 11:39:08 GMT

FASD Ireland reacts to the thematic report of the Inspectorate of the Department of Education on early intervention classes for children with autism

The Inspectorate of the Department of Education have published a thematic report on provision in early intervention classes for children with autism. The report draws on findings from inspection visits to fifteen early intervention classes conducted between September and December 2023.

Overall, inspectors found that the quality of provision in early intervention classes is generally good. Many of the schools supported the children well and most teachers prepared very appropriate learning activities based on the children’s interests, strengths and needs. Almost all schools had good systems in place to help the children feel safe, connected and supported, and many teachers used autism-specific assessment and teaching approaches and had a strong commitment to professional learning in autism.

Reacting to the report’s publication, Mike Taylor, Director of Policy & Public Affairs at FASD Ireland said; “We very much welcome and celebrate the successes of the early intervention programme for children with autism and we are very happy to see that on the whole, educators working in these settings are catering specifically to the needs of children with autism and ensuring that the curriculum fits around the child, and not the other way around. Any step toward a more child-centred approach to teaching and learning is to be celebrated.”

He continued; “I want to especially welcome recommendations around the need for a clearer vision for an inclusive education system. According to figures from the HSE, the prevalence of Foetal Alcohol Spectrum Disorder (FASD) in Ireland is up to 7.4% meaning that for every class of 30 children in Ireland, 2 of those children are living with FASD. On a wider scale, that means a school of 300 children would have around 22 children who are living with FASD. Recent research from Dr. Katy Tobin at Trinity College Dublin has found that 25% of children with a diagnosis of FASD are falling through the cracks, unsupported and leaving education before they reach 14 years of age. With the right support provided by an inclusive and child-centred education system, these children will have the appropriate scaffolding in place to complete their education, with the potential to go forward after leaving education to live independently within the limits of their disability.”

Taylor concluded; “We are very keen to engage with this restructured and expanded NCSE to ensure that no student in Ireland with FASD or any other neurodevelopmental disorder falls behind. We look forward to engaging with the Minister for Special Education and Inclusion and cabinet colleagues as we seek to build a cross-departmental programme of work to support people living with FASD, their families, carers, and supportive professionals. The Taoiseach has recently established a Cabinet subcommittee on Disability, and we believe that this could be a powerful vehicle for necessary disability policy change in this country. We are engaging with families on a daily basis through our FASD Hub Ireland support and advice line who tell us exactly what changes are needed and we are committed to working with key stakeholders on all sides to make those changes a reality.”

Mike Taylor joins the FASD Ireland Team

Wed, 01 May 2024 23:00:00 GMT

Mike Taylor joins the FASD Ireland team as Director of Policy and Public Affairs

FASD Ireland are delighted to announce the appointment of Mike Taylor as the Director of Policy & Public Affairs. Mike's appointment comes following an 18-month period working in the Oireachtas as a Parliamentary Assistant. Mike is from Kilkee and studied Law with Political & Sociological Science at NUI Galway, where he served as President of the Law Society there. He is currently undertaking a Diploma in PR & Communications from UCD.

Commenting on his appointment, Mike said; "I am delighted to join the fantastic team here at FASD Ireland. Having spent the last number of months on their Advisory Board, I am looking very much forward to the exciting challenge of working on our core aims with the team here. Foetal Alcohol Spectrum Disorder (FASD) is Ireland's most prevalent neurodevelopmental disorder. We have the third highest prevalence of FASD in the world, and the HSE estimate that up to 7.4% of the population are living with FASD in the Republic of Ireland - whether they are aware of it or not.

"Despite all of these facts, there is no statutory diagnostic criteria and no diagnostic pathway, and most crucially no support provided by the State for people living with FASD. This significant gap in service provision is where we come in. FASD Ireland provides education, awareness and support, we also deliver advocacy on behalf of the FASD community in Ireland to key decision makers in areas of Government and public policy.

In his new role, Mike will lead efforts to shape policy agendas, engage with policymakers, and advocate for evidence based whole-of-Government solutions to address the challenges faced by individuals living with FASD. He will also oversee public affairs strategies to raise awareness and promote education about FASD, and work with the FASD Ireland team to drive systemic policy change for people living with FASD.”

Speaking about Mike’s appointment, Tristan Casson-Rennie, CEO of FASD Ireland said; “I'm thrilled to welcome Mike Taylor to the FASD Ireland Team in Ennis. Mike brings his expertise and political insight to our organisation. With his dedication and skills, we look forward to advancing our work in advocating for and supporting people living with FASD."

As well as his role in FASD Ireland, Mike also sits as a Director on the Board of Clare Local Development Company and serves as a Peace Commissioner for County Clare. On a local level, he also sits on the Board of Raidío Corca Baiscinn and is a member of the Enabling Team of Loop Head Together. A former Local Election candidate, Mike has far-reaching connections in politics in Ireland going as far as Taoiseach, Simon Harris, who has recently been invited to meet the FASD Ireland team at their office at 51 O’Connell Street in Ennis.

FASD Ireland awarded €220,000 in funding for expansion of its national support hub

Fri, 19 Apr 2024 14:20:14 GMT

National social enterprise FASD Ireland awarded €200,000 in funding for expansion of its national support hub

Ennis-based FASD Ireland, the country’s first national hub to support individuals, families and carers living with Foetal Alcohol Spectrum Disorder (FASD), is to be awarded €200,000 in funding.

The announcement was made by Minister for Disability Anne Rabbitte during a Dáil debate on 17th April. Minister Rabbitte said: “Approximately €200,000 in funding will be awarded to the FASD Ireland in Clare for the national hub. I commend the work it has done in putting in place the telephone line and supporting families when there is such a deficit in Departments and the HSE in terms of taking on the mantle of providing support. I compliment the team in Clare on what it is doing. I am very supportive of it.”

Welcoming the announcement, CEO of FASD Ireland, Tristan Casson-Rennie, said: “I am delighted that Foetal Alcohol Spectrum Disorder has been discussed in detail in Dáil Éireann. FASD Ireland has some key asks of Government, importantly that FASD is recognised as a disability in Ireland as it is in the rest of the developed world, that the HSE develops statutory guidelines for diagnosis of FASD, and that supports are in place for people living with the condition.”

FASD is Ireland’s most prevalent neuro-developmental disability, with an estimated 240,000 people across Ireland living with the condition. Ireland has the third highest prevalence globally, following only South Africa and Croatia. Despite the significant numbers of people living with the condition in Ireland, there is still no formal diagnosis pathway for people who think they may have FASD, and very little supports for people who live with the condition.

During the Dáil debate, Independent Clare TD, Violet-Anne Wynne sought confirmation that the condition will be given classification as a disability, as it is currently not, and confirmation of financial support for the organisation.

Deputy Wynne said: “Foetal alcohol spectrum disorder, known as FASD, is Ireland's silent epidemic and is caused by prenatal alcohol exposure. FASD is lifelong brain damage for which there is no cure or treatment and according to the Journal of the American Medical Association in 2017, Ireland has the third highest prevalence of people living with FASD in the world at 4.75%, behind Croatia at 5.3% and South Africa at 11.1%.”

Wynne continued, “Alarmingly, Ireland is the only country in the developed world that does not recognise FASD as a neurodevelopmental disability. The HSE does not currently have any statutory guidelines for diagnosis, there are no specialist clinicians or diagnosis pathway and few support services for people living with the condition.

Minister Rabbitte also confirmed that for now her Department will have responsibility for FASD policy, and recognised the urgent need for other departments within government to also share responsibilities for the condition.

The announcement comes only weeks after the first anniversary of the national FASD Hub opening in Ennis, providing support to over 800 people living with FASD, their parents, carers and professionals working with families.

Casson-Rennie continued, “With the confirmation of financial support from the Department we can continue our work to raise awareness of FASD and to provide support through FASD Hub Ireland, our national telephone helpline to people living with the condition, their families and professionals who work with them. We are overjoyed to receive this significant funding to provide our services through 2024, and look forward to a SLA being established for the years ahead. This money will allow us to develop our team and expand our headquarters in Ennis, County Clare. I would like to thank Minister Rabbitte for her continued support, and Deputy Violet Ann Wynne for submitting the Topical Question.”

FASD Ireland is a not for profit social enterprise based in Ennis, providing support nationally to people living with FASD, their parents, carers and professionals working with families. The FASD Hub is available to all Monday to Friday 10am until 4pm by phone 065 6703098 or online www.fasdhub.ie

ENDS

For further information on this press release, please contact Scott Casson-Rennie: scott@fasdireland.ie or 065 6703096

Full transcription of the debate can be found here: https://www.kildarestreet.com/debates/?id=2024-04-17a.20&s=FASD#g25

The full video recording of the debate can be found below.

FASD Hub Ireland® celebrated its first birthday

Wed, 27 Mar 2024 20:11:18 GMT

Time for celebration at FASD Ireland in Ennis

27th March 2024

With more than 800 enquiries in its first 12 months, FASD Hub Ireland® celebrated its first birthday on 27 ^th March, and this coincided with registered trademarks being granted for the service in Ireland and Northern Ireland.

Plans to launch a telephone helpline and operate a pilot were supported with funding from Social Entrepreneurs Ireland Awards Academy 2022 and Action Lab 2023 programmes. FASD Hub Ireland® launched in March 2023 providing confidential support, advice and signposting about Foetal Alcohol Spectrum Disorder (FASD) not previously available in Ireland. The telephone helpline and web-based service is available to help anyone living with FASD, their parents, carers and also any professionals who might work with someone living with the condition.

FASD Hub Ireland® is based on similar support services provided in other countries where FASD is a recognised disability and funded by government agencies. Since the launch here in Ireland, there has been an increased awareness about FASD, especially from people hearing about the condition for the first time. The HSE estimated in September 2022 that as many as 7.4% of the Irish population are living with FASD and most of those people will have other diagnosis, such as ADHD and ASD, whilst not being aware that FASD is perhaps their underlying condition.

Chief Executive Officer of FASD Ireland, Tristan Casson-Rennie said, “It is safe to say that FASD Hub Ireland has been a life changer and life saver given some of the enquiries we have received over the last 12 months. We weren’t sure if there would be much uptake at the start, given the lack of awareness about the condition and no diagnosis pathway available.” He continued, “However the first call arrived within 10 minutes of the Hub opening. Enquiries have ranged from parents and carers wanting to find out more, or who are in crisis, to a gentleman in his 70’s who suspects he is living with FASD and wanted to share his coping strategies. Many professionals from Teachers to Social Workers and GPs have called for guidance and signposting. It is clear that because of the lack of a diagnosis pathway and funded support, people have nowhere to go when they realise they may be living with FASD and need help and advice.”

FASD Ireland has recently been awarded funding from the Department of Children, Equality, Disability, Integration and Youth to continue to provide the service. Mr Casson-Rennie said, “Minister for Disability Anne Rabbitte TD has been a fantastic supporter of our work, and has been able to identify and secure funding which has allowed us to employ an experienced Hub Coordinator. FASD Hub Ireland is continuously evolving. With new research and information being updated from around the globe, we have to ensure that all of our team are current, whilst ensuring every enquiry is responded to with the empathy and understanding that is deserved.”

FASD Hub Ireland® is open Monday to Friday, 10am until 4pm. Call 065 670 3098 or contact via their webform: www.fasdhub.ie

Minister for Disability confirms commitment to financially support FASD Ireland

Tue, 05 Mar 2024 11:52:53 GMT

Minister for Disability, Anne Rabbitte TD, confirms departments commitment to financially support FASD Ireland

FASD Ireland are delighted to acknowledge the commitment made by Minister of State for Disability, Anne Rabbitte T.D. in Tuesday evenings Dáil Éireann Motion - Supporting People with Disabilities and Carers.

Foetal Alcohol Spectrum Disorder (FASD) is Ireland’s most prevalent and only preventable neurodevelopmental disability and affects up to 7.4% of the population. Everyone knows someone who lives with FASD, they just may not have a diagnosis.

We are pleased that new funding will be allocated to support us in developing FASD Hub Ireland and will also provide for new research specifically into the prevalence of FASD in Ireland.

We would like to also congratulate the other organisations mentioned in the clip who were included in the announcement on Tuesday evening.

Drinking any amount of alcohol whilst trying to conceive or during pregnancy may harm your baby. If you are able to stop drinking alcohol, then both parents should stop 6 weeks before conception.

New Research by Prof Anita Gibbs

Sat, 17 Feb 2024 11:45:38 GMT

New Research - Prof Anita Gibbs

‘No one believed us: no one came to help’: caregivers' experiences of violence and abuse involving children with foetal alcohol spectrum disorder .

Child and adolescent-to-parent violence and abuse (CAPVA) refers to abusive and violent behaviours by children towards their parents or primary caregivers. The abuse and harmful behaviours can include a full range of physical, emotional, verbal, financial, and material actions over prolonged periods of time, from childhood to young adulthood. Parents and caregivers of children with neuro-developmental conditions are vulnerable to CAPVA, and little research has been undertaken exploring the experiences of caregivers of children with foetal alcohol spectrum disorder (FASD).

In Aotearoa New Zealand, 56 caregivers were interviewed using semi-structured interviews, and over half identified significant levels and impacts of CAPVA, including dealing with physical violence and frequent emotional abuse. Health and stress issues were present in all caregivers interviewed. Caregivers also identified how systemic ignorance and a lack of understanding from caring professionals led to parent blaming, a sense of shame and isolation. Yet, caregivers also showed resilience and implemented strategies of de-escalation and distraction. More specialised practice is needed in this emerging field of family violence and in how to support families with children who have FASD.

FASD Ireland supports open letter calling for a health impact assessment of the Safe Alcohol Bill

Thu, 08 Feb 2024 11:54:57 GMT

FASD Ireland supports open letter calling for a health impact assessment of the Safe Alcohol Bill

More than 65 health, social and community organisations, academics and advocates, have come together to voice strong opposition to proposed measures in the Sale of Alcohol bill that will dramatically increase the number of venues serving alcohol, as well as significantly extending the opening hours of pubs, bars and nightclubs.

The open letter, proposed and written by Colleagues at Alcohol Action Ireland , to the three government party leaders – An Taoiseach, Leo Varadkar, Tánaiste and Minister for Foreign Affairs, Micheál Martin, and Minister for the Environment, Climate, Communications and Transport, Eamon Ryan – is an urgent call for this government to fully assess the implications of increased alcohol availability.

CEO of Alcohol Action Ireland Dr Sheila Gilheany said: “This letter shows the deep disquiet in the health and social community and makes a shared call for an immediate health impact assessment (HIA) of this legislation to be carried out. We have been calling for this from the very start of this legislative process and the question must be asked – why doesn’t this government want to carry out a HIA?

“We, and all of the organisations listed, from health to community groups, to academics and individuals, are simply asking the government to know what the health, social and financial costs of these proposals will be before they jump into it. This is not too much to ask.

To date, the Minister for Justice, when asked about plans for a HIA has hidden behind references to consultations which have already been carried out. Such consultations provide useful views, but they do not replace the need for specific data on the numbers and funding levels of Gardaí, medical, social and transport services which will be required to deal with the fallout from this legislation.

While it appears that government is not troubled about these issues, polling on this bill highlights that the public are certainly worried with 67% of people concerned about the potential impact on public services (such as Emergency Departments, ambulances, Gardaí, and transport) due to the proposed extension of opening hours for pubs, late bars, and clubs.

FASD Ireland Chief operating Officer, Scott Casson-Rennie, provided advice and guidance to Alcohol Action Ireland relating to the impact of Foetal Alcohol Spectrum Disorder which was highlighted in the open letter, with Ireland estimated to have a prevalence rate of 2.8% - 7.4% of the population, the third highest prevalence rate in the world.

You can view the open letter here or for further information you can visit Alcohol Action Ireland website

FASD Ireland awarded place on Social Enterprise Ireland Action Lab 2023

Tue, 30 Jan 2024 12:49:49 GMT

FASD Ireland selected to take part in SEI Action Lab

FASD Ireland is one of eight organisations to win a place on Social Entrepreneurs Ireland’s (SEI) Action Lab programme. This three-month programme aims to accelerate social change through the power of people. The eight successful participants had previously taken part on the SEI Ideas Academy, an earlier programme, and were chosen for the Action Lab based on their potential and progress since 2022.

Tristan and Scott Casson-Rennie earned their place on SEI’s follow-up accelerator, which includes tailored support and a bursary of €3,000. This win shows the continuation of support from SEI, with Tristan having graduated from the SEI Ideas Academy in June 2022. Tristan successfully pitch for seed funding in November 2022, where SEI awarded FASD Ireland €6,500 to continue their work.

There are more than 244,000 people across Ireland affected by Foetal Alcohol Spectrum Disorder. FASD is the largest preventable neuro-developmental disability in Ireland, affecting 600 babies annually. FASD is associated with physical, mental, educational, social, and behavioural difficulties which will start to appear as the child turns five years old. The condition is often misdiagnosed resulting in detrimental effects on children’s development which follows them well into their adult lives. Without any kind of diagnosis, children are often excluded from primary and post-primary education, which has massive knock-on effects.

Ennis-based Tristan and Scott launched FASD Ireland 14 months ago in order to; prevent FASD from happening in the first place, support people living with FASD and raise awareness of FASD across Ireland.

Since 2022, with the support of Social Entrepreneurs Ireland, FASD Ireland have spoken at the Pathway to Inclusive Education conference. They have also used funding from SEI towards the establishment and pilot of the National FASD Hub for Ireland. Scott and Tristan hope to launch the National FASD Hub for Ireland on O’Connell Street, Ennis during the first quarter of 2023.

Social Entrepreneurs Ireland’s Action Lab support the strategic progress of high-potential solutions and helps social entrepreneurs to develop as leaders by giving them the scaffolding and space to experiment and grow. The programme will do this through consultation, workshopping and by maximising the expertise available within SEI’s extensive network to help each participant progress towards achieving tangible impact. The other seven organisations’ focus area varies from education fitness programmes for children experiencing homelessness and creating a supportive network of farmers, crafters, processors and designers in facilitating an Irish regenerative fibre system. Participants were selected for the programme following a period of internal research and selection on SEI’s behalf. At the end of the programme, participants can apply for a share of €21,000 in seed funding to further support their work.

Speaking about the Action Lab, SEI’s Programme Manager said, “We are very excited to launch the Social Entrepreneurs Ireland Action Lab. The eight participants are incredible social entrepreneurs, who we believe, with the right support, will accelerate the pace of change and help solve some of Ireland’s entrenched social problems.”

SEI are grateful to have the 2023 Action Lab Programme supported by The Tomar Trust, eBay Foundation and Seed Fund supported by RBC Brewin Dolphin.

New research - Dr Katy Tobin from Trinity College Dublin

Thu, 28 Sep 2023 11:15:10 GMT

New research - Dr Katy Tobin from Trinity College Dublin

First research of it's kind carried out in Ireland - Understand the Experiences and Need of Family Caregivers of People living with FASD

This new research shines a light on the lives, challenges and support needs of families raising children and young people with Foetal Alcohol Spectrum Disorders here in Ireland. The "FASDcare" study is the first of its kind in Ireland and included a survey of 70 caregivers.

Dr Katy Tobin, Assistant Professor in Biostatistics at the Global Brain Health Institute and Public Health and Primary Care, School of Medicine, Trinity College Dublin was the lead investigator on the research. The report highlights the enormous stress and financial strain faced by caregivers of children and young people living with FASD in Ireland as they navigate a system that does not provide diagnosis or specialist services for this complex range of disorders. FASD affects about 5% of young people in Ireland, the third highest rate in the world. Our findings illustrate the urgency for change to address the major inequities and unmet need faced by thousands of families affected by FASD in Ireland.

Foetal Alcohol Spectrum Disorders (FASD) are a range of adverse health effects attributable to alcohol consumption during pregnancy. A major gap exists in the availability of support services to meet the complex needs of people living with FASD in Ireland, including educational, social and medical services. FASD are associated with a wide range of complex co-morbidities. The most common co-morbidities reported in this new study were emotional or behavioural disorders including Attention Deficit Hyperactivity Disorder (ADHD) / Attention Deficit Disorder (ADD) (64%) and Autism Spectrum Disorder (ASD) (21%). The rate of ASD in this study far exceeds that reported in the literature, potentially indicating misdiagnosis of children here.

The launch of the report was held at Trinity College Dublin, with Dr Tobin presenting her summary of the research.

You can read the full report by downloading it below.

Funding success to raise awareness of FASD in Clare Schools

Thu, 17 Aug 2023 11:23:04 GMT

Funding success to raise awareness of FASD in Clare Schools

A recent funding application to the St Francis Credit Union in County Clare has proved a success for FASD Ireland. The application for funding from the Credit Unions ‘Social & Cultural Fund 2023’ was made earlier this summer, with the application being successful.

The application was made with the intention of providing awareness training to Transition Year students in Schools across the County.

Foetal Alcohol Spectrum Disorder (FASD) is caused by prenatal alcohol exposure and is associated with a range of lifelong physical, mental, educational, social and behavioural difficulties. Whilst the message from FASD Ireland and the Health Service Executive (HSE) states, “No amount of alcohol is safe when planning to conceive or during pregnancy” it is hugely important that all generations of Irish Society are aware of the risks of consuming alcohol when planning to conceive or during the pregnancy.

The awareness training will take place online and in schools to ensure maximum impact on Students and Educators who have responsibility for the Transition Year, with around 20 Secondary Schools across Clare being offered the training.

Tristan Casson-Rennie, CEO of FASD Ireland, commented: “As a national organisation based in Ennis, we are very keen to reach young people locally to provide them with information that is important for their futures, their partners futures and ultimately their children’s futures. FASD does not just affect those who may have an addiction to alcohol, it can be from just one glass of wine/vodka on a Friday night, and the lifetime affects of that can have a massive impact on a child and of course their families. It is not about shame or blame, it is about education and awareness, and we are delighted that St Francis Credit Union have recognised the need to be able to education on this risk in Schools across Clare.”

Louis Fay CEO St Francis CU said: “As a credit union we have been serving the community for 57 Years and in that time we have seen the credit union grow from strength to strength. I am delighted to be in a position to support FASD Ireland on behalf of the members at St Francis Credit Union. We are a non-profit organisation where all funds are re-invested into the services we provide our members or used to support the common bond through Charities, sports clubs, local community events. We set up the Social & Cultural Fund back in 2018 with the main objective to support organisations such as FASD Ireland that are also a not-for-profit organisation and are proud to do so, applications for next year will open in January 2024”.

The training for Transition Years is available now. If you would like to find out more about this for your school or indeed have a child in TY, then please contact office@fasdireland.ie or call 065 6703096.

Let's talk about FASD - Starting a conversation from a National and International perspective

Thu, 27 Jul 2023 11:36:22 GMT

Let's talk about FASD - Starting a conversation from a National and International perspective

Our CEO Tristan was thrilled to be invited to speak at the Mid West Regional Drugs and Alcohol Forum event 'Let's talk about FASD - Starting a conversation from a National and International perspective', held at the Greenhills Hotel in Limerick.

Tristan gave a brief introduction to FASD including common symptoms and challenges, three key priorities that need addressing urgently and require little more than Ministerial approval for changes to be made (Long Term Illness Card; Awareness of FASD in Education; Justice system) and what the future looks like for FASD Ireland, our plans and how they might be funded going forward.

Eleanor Keogh from the HSE Integrated Alcohol Service then spoke about the services that are being provided and gave an insight into the numbers/types of clients the service is helping.

Dr. Denise Hatzis Clinical Psychologist talked about the work that she is doing with Griffith University and establishing a FASD Diagnostic Clinic in Queensland, Australia. A plenary session followed where attendees were asked to consider the symptoms they might observe in a child living with FASD.

Bernie O'Grady from Cooolmine talked about Parenting under Pressure (PUP) and how the framework that has been developed may help parents and carers of children living with FASD.

The event concluded with the panel receiving a number of questions from attendees relating to the earlier presentations. It was lovely to see so much interest from across Tipperary, Limerick and Clare. We even had someone from Mayo attend!

Events like this really do help us to raise awareness of FASD and we look forward to the next time!

#FASDIrl #FASDAwareness #LetsGetIrelandTalkingAboutFASD

Alcohol label plan praised and criticised

Mon, 24 Jul 2023 11:27:10 GMT

Alcohol label plan praised and criticised

Britain and Canada express interest in initiative as others voice complaints

When Minister for Health Stephen Donnelly signed "the world's first comprehensive health labelling of alcohol products" into law last May he said he looked forward to "other countries following our example".

Correspondence on the initiative released by the Department of Health does indeed show some foreign interest in the initiative while also offering an insight into some of the concerns raised about the plans in Ireland

Issues raised with the Minister range from a suggestion by foetal alcohol spectrum disorder (FASD) campaigners that the plans for the labels do not go far enough to complaints that the labels will not be bilingual and concern from the drinks sector at the impact on wine imports.

Records released under the Freedom of Information Act show how politicians in Britain and Canada have sought meetings with Mr Donnelly to find out more about the planned labels which are due to appear on beer and wine bottles in 2026.

The Irish Times previously reported how Eurocare, an alliance of 51 organisations that aim to reduce and prevent alcohol-related harm in Europe, praised the plans in a letter to Taoiseach Leo Varadkar, Tánaiste Micheál Martin and Mr Donnelly.

It likened the initiative to the workplace smoking ban brought in by Ireland almost 20 years ago and suggested the alcohol labelling plans were a “turning point for public health” that would bring about “a significant reduction in alcohol-induced harm, not just in Ireland but globally”.

Domestic Concerns

But the correspondence also reveals domestic concerns at the plans.

Chief executive of FASD Ireland Tristan Casson-Rennie wrote to Mr Donnelly in May expressing his disappointment at the planned labels.

FASD Ireland describes foetal alcohol spectrum disorder as “Ireland’s silent epidemic” and estimates there are 244,000 people affected by conditions related to alcohol exposure before birth.

Mr Casson-Rennie told Mr Donnelly the planned image of a pregnant woman holding a wine glass, with a red line through the woman, should not be used, saying, “It further reinforces the message of blame and shame on the pregnant woman, and not on the effects of prenatal alcohol exposure.”

He argued there should be a written warning that “no amount of alcohol is safe at any time when trying to conceive or get pregnant” and it should be across the front of any alcohol container, not at the rear of the bottle.

The department said: “The pregnancy pictogram included in the labelling law was chosen based on international and national data as being the most effective method to convey the intended message.”

In other correspondence, Fine Gael MEP Frances Fitzgerald passed on an email from Wines Direct chief executive Gareth Keogh who said Ireland was going on a “solo run”.

Mr Keogh said his business deals with independent, family-run suppliers and labelling specifically for Ireland would be an “extra cost and will render the wine unsellable in the rest of Europe”.

He suggested that such winemakers “will simply stop supplying the Irish market”.

'A Shame, not disaster'

He added that winemakers would “easily find another market”, adding “Losing the Irish market for them would be a shame but not a financial disaster. However for us it would be catastrophic.”

Mr Keogh also wrote that while it was not his main point, it was repeatedly said to him during a trip to Italy that “Ireland is being used as a rod to beat the wine industry.”

He said, “All EU countries have their own anti-alcohol activists and the Irish Government’s move has had the effect to put pressure on EU national governments to start putting health warnings on wine.”

He added, “Imagine if the French insisted that Ireland put carcinogen warnings on beef.”

The department’s response outlines how the labelling legislation has a three-year lead-in time and will not come into force until May 2026 to allow businesses time to prepare for the measure.

It said it was designed to be “proportionate and balanced” and it provided the option that the health warnings would be on a sticker attached after the alcohol was imported into Ireland.

Mr Keogh told The Irish Times that the extra costs of such stickers would still fall to the winemaker and many would “object to having a label equating their wine with cancer and just refuse to export”.

Green Party TD Neasa Hourigan wrote to Mr Donnelly in March asking him reconsider the decision not to include Irish language warnings on the new labels.

She said: “There seems little consistent reasoning why the producers of wet wipes, tobacco, sanitary items and cups should be bilingual, and alcohol producers should be exempt.”

The department said that the Public Health (Alcohol Act) 2018 required licensed and off-licence premises and websites that sell alcohol to have bilingual notices displayed.

It added that “In the case of labels on alcohol products, the information is required in the English language only” and that this was done “in the interests of proportionality… to lessen the burden on businesses.”

The original article is located here .

Press Release - FASD Ireland response to Alcohol Labelling

Mon, 22 May 2023 11:34:38 GMT

Press Release - FASD Ireland response to Alcohol Labelling

Jeff Noble - “FASD 1oh!1 – Bringing it back to Brain”

Mon, 24 Apr 2023 12:25:24 GMT

“FASD 1oh!1 – Bringing it back to Br ain” - Jeff Noble in Ayr , Scotland

Having been a guest on FASD Success podcast with host Jeff Noble last year, it was inevitable there would be a time when I would get to meet him in person. If you missed that podcast then you can listen here: Episode 114 - FASD Success Show . Hosting a podcast myself with a similar style – insert some humour and it is more relatable to the listener, I was struck by a number of similarities between myself and Jeff, so when I was invited by Jeff to be a guest at his training event in Ayr, Scotland last week, I jumped at the chance.

Jeff is based in Canada, so this was quite a big event for Scotland, his first time in the UK, with a number of countries already visited around the world. The majority of those attending the event were parents or carers of children and young people with FASD, those with a professional interest and a number of large and small organisations sent representatives and that precious and very important presence of some adults living with FASD also attended.

“FASD 1oh!1 – Bringing it back to Brain” was well attended with everyone hanging on to each word that Jeff said, the real life stories he shared, including how he got into the FASD world. It wouldn’t be fair for me to give any of that away on this blog, as those are Jeff’s stories to tell but I did have some “aha” moments from the day – the biggest aha moment was to be in a room with others who understood me, not just as someone who works in Irelands only FASD organisation, but also as a parent. It was a validating experience.

There were lots or relatable points during the day, but none more so than how we use language. I am not sure where this came in the day, but I feel like it is a very important point that he made on the use of the word ‘Behaviour’. A word that we all regularly use, and which can be related to ‘bad’ or ‘naughty’ because that is what we hear. A simple change of wording from ‘behaviour’ to ‘symptom’ changes our perception of how a child or young person with FASD is dealing with what is being thrown at them, given that they have a condition where the symptoms are often seen as behaviours.

Parents and carers are regularly judged on their parenting styles and techniques, the whole world over, we all parent differently. Parents and carers of someone with FASD will hold a number of strategies that work for them, but to someone on the outside, this may be seen as ‘enabling’. No consequences, no telling off etc. For that family it could be the difference between an extreme escalation in symptoms that results in some form of violence (just one example) as a child/young person finds themselves unable to deal with a situation and unable to articulate that like someone with a neuro typical brain function. This is not enabling – it is Accommodating – and simply put it makes life easier for the child/young person.

One final thing that struck me was the messaging from Jeff in terms of his thoughts on alcohol... Jeff doesn't actually partake in alcohol, but his message "I am not anti-alcohol, I am pro planning pregnancy". This really struck with me, because I think when we work in this sector it is extremely easy to fall into the belief that FASD is always associated to addiction and abuse. I have yet to meet any Mother who set out to intentionally harm their Child, and I am a firm believer in choice. It was not something I had thought of before, and for me I think if you are part of the problem then you are part of the solution.

There were so many other great areas covered during that day, and I would unlikely be able to do them as much justice as Jeff would himself, so it does go without saying that if you get the chance to hear more from Jeff yourself, then I would highly recommend doing just that.

A shout out to Oshays Brain Domain who hosted the event with Jeff, Aliy Brown, who it was great to catch up with after 4 years who was the original FASD Hub project lead in Scotland, Judith Knox now working at FASD Fife (my home county) and lastly to the amazing adults who spent the time with us on the day and shared some of their experiences – including our very own Maggie May.

You can listen to another quick podcast with Jeff, which I recorded with him once the day was finished, where we had a discussion about why our kids swear, drinking culture and the difference between countries. And a few laughs: The A&F Podcast - with Jeff Noble

Salford FASD Conference - Part 2

Fri, 14 Apr 2023 09:18:05 GMT

Our second and final blog about the Salford FASD Conference has been written by our Hub Developmental Assistant - Rob O'Connell. This was Rob's first opportunity to network with others working to improve support and services for those living with FASD across the UK and Ireland.

A couple of weeks ago I was privileged to attend the conference “FASD in the UK: Building on 20 years of progress” at Salford University, Manchester

It was my first time attending an event specifically about FASD. It was amazing to see so many people in the one place so passionate about this neurodevelopmental disability and it really helped to put into perspective the grasp FASD has on the UK, much like the prevalence in Ireland. I went to Salford with a mindset of wanting to learn as much about what is going on in the UK now and then trying to compare that to see how we can improve awareness, supports and education of FASD in Ireland.

Throughout the day I had the pleasure of talking to and listening to different people including people that live with FASD themselves and others that are doing such inspiring work with FASD in the UK. I learned so much from my time at the conference and was excited to bring it back and share with the rest of the team at FASD Ireland.

An area of concern for me before going to the conference, is how do I as the FASD Ireland Hub Development Assistant, help to set up the hub in such a way that it runs efficiently. I always want to make sure that whatever I do with FASD Ireland is beneficial to the organisation. I want to make it an easy and a seamless transition for someone to take my place when my placement is over and I have to return to university.

I had the pleasure of talking to Jo Garofalo who works at FASD Hub Scotland who helped me to understand that training is key. She explained that most of the people that work in FASD Hub Scotland are parents of individuals with FASD which I found quite interesting as these people would be quite knowledgeable in areas surrounding FASD through their experiences as parents and carers. Therefore, to allow a seamless transition between my role and the person who takes the role after me I must have an adequate plan in place that will help people understand FASD and work the Hub efficiently.

I was delighted to have the opportunity to listen to Dr Raja Mukherjee speak at the conference. It was amazing to hear the story of how FASD has changed in the UK over the last 20 years. Some of the information that Dr Mukherjee provided really helped me to understand the direction in which FASD Ireland is going. He highlighted the importance of a network of people working together with people that are living with FASD. Dr Mukherjee spoke about diagnosis and how it is a multi-disciplinary assessment as FASD can affect an individual in many ways through behaviour and education for example, characteristics of FASD will be seen at school, at home, at work and in many areas of everyday life. Therefore, it is crucial to have a collaborative of people working from different sectors, departments, and organisations to provide support for individuals living with FASD in the best way possible after diagnosis. I was excited to share this with the team at FASD Ireland, in hopes that we can instil this way of thinking and organise these collaborative teams to help people in Ireland as Dr Mukherjee plans to help people in the UK living with FASD.

Along with the idea of multi-disciplinary assessment and multi-disciplinary care I learned the importance of understanding FASD on a National, Regional and Local level. There is already a healthcare system in Ireland, and it is about using the system that is already there efficiently. We do not need to develop a whole new referral route for the “new surge” of 240,000 people that have FASD in Ireland. These people are already here, these individuals are living with FASD every day without even knowing it or even might have been told it is something else. The ideal is to get the healthcare system from the bottom-up to understand FASD and to be able to deal with it in a way that will be beneficial for every person with FASD. There should be no more misdiagnosis being made as every Doctor and GP should be educated in how to recognise the characteristics of FASD when they are presented in front of them. This is currently not the case in Ireland with most Healthcare professionals, and it is of upmost importance that people are trained and educated so that the healthcare system can start to recognise FASD in these individuals.

A view that the UK is beginning to take in relation to FASD that I found interesting is that they have started to assume that all people have FASD until proven they don’t. Instead of spending lengthy amounts of time going through records and looking for evidence of pre-natal alcohol exposure, the experts in the UK have said it makes more sense to assume that there was alcohol exposed pre-Nataly because we know that 80% of women will drink alcohol at some stage throughout their pregnancy. I thought that this would be a good view to have in Ireland as it would save time looking for evidence of alcohol exposure and if the characteristics of FASD are presented due to the high rate of women that drink during pregnancy it would only make sense to connect the dots.

Miranda Eodanable spoke about “people talk about FASD diagnosis but barely any young people are asked about it”: A photovoice study with adolescents with FASD exploring disability, disability identity and support. This was something that I had not really thought about before the conference. It struck me and made me realise that this is probably something that most people who are diagnosed with a disability will have to deal with. The fact that they realise what the diagnosis means will generally happen at the crucial age of when people are normally becoming more self-aware of their identity as young adolescent. This could be quite detrimental to a young person’s self-confidence, and I believe that it is crucial we put in supports in Ireland to prevent this from happening be that through peer support groups or meetings with psychologists even after a diagnosis is made.

It was interesting to listen to “How we want to be treated” from The UK FASD Manifesto from people with FASD. I thought these young people were so brave to get up in front of all the conference and talk about their lived experience and their hopes for the future of FASD and how they would like to be treated. Some of the points the speakers made:

- Don’t call FASD a problem.

- They want to be asked to do things not told to do things.

- They said how it is easy to feel rejection.

- They just want people to understand, so if you are unsure of something just ask.

Something that really helped me in dealing with parents calling the hub was the young people did not blame their birth mothers for their FASD as their birth mothers didn’t have the information that we have today. This is quite an honourable way of looking at it and it’s known that most children don’t blame their mother for their FASD they blame the system for not having the awareness of FASD.

Overall, the Conference went brilliantly. I learned so much and I hope to use my newly found knowledge to put to good work in Ireland.

Salford FASD Conference - Part 1

Thu, 06 Apr 2023 15:35:30 GMT

FASD Ireland's Maggie McHugh reviews the Salford FASD Conference as someone living with FASD.

I recently had the opportunity to attend the conference "FASD in the UK: Building on 20 years of progress".

Listening to all the speakers and presenters, as a person l iving with FASD I wanted to reflect on what really stuck out for me.

The first thing I noted was when any of the Presenters spoke about anyone living with FASD not once did I hear a negative word used. They referred to outcomes and behaviours that can be caused by the way a person living with FASD is treated, but never the person with FASD being the negative.

Secondly, not once did I hear the phrase ‘deliberately choosing to behave this way’, instead I heard words like ‘hope’, ‘succeeding’ and ‘inspirational’, as well as what we can do and what we can learn - just by positive interactions with individuals. These individuals are the ones teaching: doctors, educators, social workers etc. The overall take away was that the lived experiences and knowing the future isn't just prevention but also supporting the adults with FASD.

It was genuinely exciting to see how much progress the UK has made and I can see how the blocks they are building are beginning to take a similar shape in ireland. Ireland could really benefit from reviewing and understanding these research and studies and implement services that work.

The work that is being done to make diagnosis more straightforward and cost effective as well as speeding up the process of getting a diagnosis is really exciting to learn. The work that is being done by Utilising 3D Imaging and Machine Learning for Diagnostic Assessment presented by Dr Mike Suttie, University of Oxford makes me genuinely hopeful that families and individuals will be able to access a diagnosis more easily.

Another presentation that really stuck with me and struck a chord with was a presentation on "Implications of FASD for the Criminal Justice System – David Gilbert, University of Salford" and it shocked me just how vulnerable we truly are when we are put in a situation where our needs aren't being heard or met. It seems it is too easy for us to be put in a situation where we accept responsibility for a crime we didn't commit all because our developmental dysmaturity really comes into play when we don't understand what is actually being asked. This can very often be used against us in the justice system that leads to individuals being charged and sometimes imprisoned for a crime they didn't commit. This is mainly due to a lack of understand of our disability and how to ask questions in the right format for individuals to understand. For me personally it made me appreciate that I could potentially also fall victim to that, and it’s so important that this study really need to be seriously considered by those in the criminal justice system. The steps need be put in place so that Individuals with FASD don't get punished for a crime they didn't commit.

I think a highlight for everyone who attended the conference was to hear of the lived experience and their perspectives on what changes they want to see happen. 20 years ago individuals with FASD wouldn’t have been invited or even been able to represent themselves at conferences along with researchers and doctors, but at Salford individuals with the lived experiences took centre stage and they really advocated for the ‘Nothing About Us Without Us’ movement. We want to be involved and be informed and also we want people to come to us if people have questions instead of going over our heads.

The fact that doctors and researchers were acknowledging the fact that they learn so much from working with and alongside individuals with FASD and that they learn so much from just listening to what it is like to have that lived experience really shows how far everyone in the FASD field has come.

The ‘FASD Manifesto’ really embraces that individuals want to be respected and they want their voices and stories to be heard and listened to and for society to take what they say seriously and learn from them so that life doesn’t have to be so difficult for everyone.

FASD Hub Ireland launches

Tue, 04 Apr 2023 11:18:28 GMT

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Ireland's first FASD Hub launched in Ennis

Thu, 30 Mar 2023 11:41:06 GMT

Ireland's first FASD Hub launched in Ennis

IRELAND’S first national hub to support individuals, families and carers living with Foetal Alcohol Spectrum Disorder (FASD) launched this week in Ennis. FASD Hub Ireland will provide a compassionate, confidential helpline offering advice, support and signposting. The Hub is run by FASD Ireland, a not-for-profit social enterprise based in Ennis, and is part funded by Social Entrepreneurs Ireland.

FASD is Ireland’s most prevalent neuro-developmental disability, with an estimated 240,000 people across Ireland living with the condition. Ireland has the third highest prevalence globally, following only South Africa and Croatia*. Despite the significant numbers of people living with the condition in Ireland, there is still no formal diagnosis pathway for people who think they may have FASD, and very little supports for people who live with the condition.

Welcoming the launch of the Hub, Minister of State for Disabilities, Anne Rabbitte TD, said, “As the Minister for Disability, I am delighted to support the launch of the FASD Hub. We need to build more awareness of hidden disabilities in Ireland including Foetal Alcohol Spectrum Disorder and today’s launch of FASD Hub Ireland is an important first step in this. I very much look forward to working with the team over the years ahead as we develop a deeper understanding of what supports need to be developed and how best we implement them.”

FASD results when prenatal alcohol exposure affects the developing brain and body. FASD is a spectrum. Each person with FASD is affected differently. While more than 400 conditions can co-occur, FASD is at its core a life-long neuro-developmental condition. All people with FASD have many strengths. Early diagnosis and appropriate support are essential, especially for executive functioning.

The launch of the Hub at FASD Ireland’s HQ in Ennis will see Cathal Crowe TD, Violet-Anne Wynne TD, Senator Martin Conway and invited guests hear an overview from FASD Ireland on its strategy and future plans for the organisation.

Tristan Casson-Rennie, CEO of FASD Ireland, said, “We are delighted to launch the hub which will help us meet the increasing demand for support that we are seeing from families, carers, educators, healthcare workers and the wider community across Ireland. Ireland has the third highest prevalence of FASD in the world yet little is known about the condition. The launch of the hub today is a significant step forward in our vision of raising awareness of FASD across the country, to break down barriers and be a catalyst for everyone with FASD to be able to live the life they strive for”.

FASD Hub Ireland has been partially funded from grant funding provided by Social Entrepreneurs Ireland’s Ideas Academy 2022, and lately its Action Lab 2023.

“Additional funding will be required to meet the volumes of calls that are being received by FASD Ireland and we look forward to working with the HSE and Túsla to raise the awareness of FASD and provide essential support for people living with FASD across the country”, added Mr. Casson-Rennie.

FASD Hub Ireland’s support service will operate from Monday to Friday 10:00-16:00 each week and can be reached on 065 670 3098.

The original article is here .

FASD Ireland launches Ireland's first Helpline for FASD

Mon, 27 Mar 2023 11:45:22 GMT

FASD Ireland launches Ireland's first Helpline for FASD

Ireland’s first national hub launched to support those living with Foetal Alcohol Spectrum Disorder

· Minister Anne Rabbitte welcomes launch of support service

· Over 200,000 people across Ireland living with the condition

· Ireland has the third highest prevalence of condition globally

27th March: Ireland’s first national hub to support individuals, families and carers living with Foetal Alcohol Spectrum Disorder (FASD) will be launched today. FASD Hub Ireland will provide a compassionate, confidential helpline offering advice, support and signposting. The Hub is run by FASD Ireland, a not-for-profit social enterprise based in Ennis, and is part funded by Social Entrepreneurs Ireland.

FASD is Ireland’s most prevalent neuro-developmental disability, with an estimated 240,000 people across Ireland living with the condition. Ireland has the third highest prevalence globally, following only South Africa and Croatia*. Despite the significant numbers of people living with the condition in Ireland, there is still no formal diagnosis pathway for people who think they may have FASD, and very little supports for people who live with the condition.

Welcoming the launch of the Hub, Minister of State for Disabilities, Anne Rabbitte TD, said: “As the Minister for Disability, I am delighted to support the launch of the FASD Hub. We need to build more awareness of hidden disabilities in Ireland including Foetal Alcohol Spectrum Disorder and today’s launch of FASD Hub Ireland is an important first step in this. I very much look forward to working with the team over the years ahead as we develop a deeper understanding of what supports need to be developed and how best we implement them.”

Tristan Casson-Rennie, CEO of FASD Ireland, said: “We are delighted to launch the hub which will help us meet the increasing demand for support that we are seeing from families, carers, educators, healthcare workers and the wider community across Ireland. Ireland has the third highest prevalence of FASD in the world yet little is known about the condition. The launch of the hub today is a significant step forward in our vision of raising awareness of FASD across the country, to break down barriers and be a catalyst for everyone with FASD to be able to live the life they strive for”.

FASD Hub Ireland has been partially funded from grant funding provided by Social Entrepreneurs Ireland’s Ideas Academy 2022, and lately its Action Lab 2023.

FASD Hub Ireland’s support service will operate from Monday to Friday 10:00-16:00 each week and can be reached on 065 670 3098.

ENDS

Notes to editor:

*Prevalence survey by Jama Paediatrics by WHO Region in 2017 . Of 187 countries, South Africa was estimated to have the highest prevalence of FASD at 111.1 per 1000 population (95% CI, 71.1-158.4 per 1000 population), followed by Croatia at 53.3 per 1000 population (95% CI, 30.9-81.2 per 1000 population) and Ireland at 47.5 per 1000 population (95% CI, 28.0-73.6 per 1000 population).” Based on 2022 Census in Ireland, the population was 5,123,536. With a prevalence of 4.75% this equates to 243,367 people living in Ireland with FASD. In the same way, we know that in 2021 the number of babies born in Ireland was 58,443, so using 4.75%, that results in 2,776 babies with FASD.

About Foetal Alcohol Spectrum Disorder (FASD)

Foetal Alcohol Spectrum Disorder (FASD) results when prenatal alcohol exposure affects the developing brain and body. FASD is a spectrum and each person with FASD is affected differently. While more than 400 conditions can co-occur, FASD is at its core a lifelong neuro-developmental condition. More children are born every year with FASD than are born with autism spectrum disorder, spina bifida, cerebral palsy, Down's syndrome and sudden infant death syndrome combined.

About FASD Ireland

FASD Ireland is a not-for-profit social enterprise which provides awareness, education and support of FASD. Our organisation exists to support everyone with a connection (whether diagnosed or not) to FASD, and we provide a supportive environment for this to happen. FASD Ireland was established in 2021 to be the 'go to' hub for everyone living with FASD, including families, carers, educators, healthcare workers and the wider community across Ireland. www.fasdireland.ie

FASD Ireland awarded a place on Social Entrepreneurs Action Lab 2023 - Clare FM

Thu, 19 Jan 2023 12:59:56 GMT

FASD Ireland awarded a place on Social Entrepreneurs Action Lab

Ennis-based chiefs working with Foetal Alcohol Spectrum Disorder Ireland have been awarded extra funding to continue their work. Tristan and Scott Casson-Rennie have been given a €3,000 bursary and a place on Social Entrepreneurs Ireland’s Action Lab programme.

There are more than 244,000 people across Ireland affected by FASD, which is the largest preventable neuro-developmental disability in the country.

Tristan says they’re working with third level institutions in the region on the project.

Click below to hear the full interview with Alan Morrissey at Clare FM

The wires got crossed in my brain as my mom couldn't stop drinking

Sun, 04 Dec 2022 13:07:46 GMT

"The wires got crossed in my brain as my

mom couldn't stop drinking"

Maggie May McHugh was three days old when she was put into care. Some 14 years later her adoptive mother sat her down and told her that she had a foetal alcohol spectrum disorder. “My adopted mom just said, ‘Do you know what it’s like, Maggie, when you have a mosquito bite you just want to itch all the time and you’re told you cannot itch it?’” she recalled. When she nodded, her adoptive mother told her: “‘Drink was that itch, and your mom just couldn’t fight the itch.’ I was like, how I can hold any grudges?” She was fostered by her now adoptive mother as a three-month-old baby but kept up weekly visits to her birth mother for most of her childhood.

Her diagnosis came after a German friend of the family visited her Foster home in Clare when McHugh was around three years old and immediately recognised signs of the condition from children whom she had fostered. "I had facial features to a certain extent. They weren't as severe as some cases are," McHugh said, adding that they all but disappeared as she grew into adulthood. "I wasn't really talking. I wasn't really walking. I was very skinny. I wasn't thriving. I didn't like eating." With little known about the condition in the late 1990s, and Irish child psychiatrist, who flew to Canada to train in the condition, eventually diagnosed McHugh when she was five or six.

HSE Figures released last week, in answer to a parliamentary question, estimate about 6,000 babies a year are born in Ireland with foetal alcohol spectrum disorder (FASD) and 600 with foetal alcohol syndrome, the most severe form. A World Health Organisation (WHO) study in 2017 estimated Ireland had the third highest rate of FASD, after South Africa and Croatia, at 47.5 per 1,000 population. The global average was 7.7%.

Katy Tobin, an Assistant Professor at Trinity College Dublin and a leading expert on FASD, said it was "difficult to say how widespread it is with any degree of accuracy" due to limited research, but the WHO estimated almost one in 20 people in Ireland could have the condition. The effects are many. "Multiple areas of brain function are affected by prenatal alcohol exposure, including language, more skills, memory and attention," she said. "Academic performance is also affected, [as are] social skills and impulse control. FASD has over 400 conditions associated with it, including ADHD, anxiety disorders and autism." She added: "People with FASD are more likely to develop mental health problems and to become involved in criminal activity and are at higher risk of suicide and addiction."

For McHugh, she has learnt to manage symptoms which affect every facet of her daily life, from cleaning her room to eating meals. "I would be termed as high functioning. But some of the co-morbidities would be: I have an anxiety disorder, I am dyslexic, I have sensory processing issues, ADHD, I have short term memory loss," she said. "I have weak muscle tone in my hand, so I find writing quite a struggle." McHugh added that children with FASD could be misconstrued as naughty or inattentive in classrooms because they get overwhelmed by information. "I don't feel hunger, so I need to be reminded to eat. I have super high pain tolerance, so you know I'd be covered in bruises just from bumping into things, and not notice," she said. "The wires got crossed in my brain."

But one of the most debilitating aspects is the crashing exhaustion she calls 'burn out', which can hit her unexpectedly a few times a year. She does not 'function' when it strikes. "I cannot tell if things are hot or cold, or wet or dry. I cannot form sentences. I cannot think coherently. It is complete exhaustion. Sometimes I recover in weeks. Sometimes it can be months." Although she was told she had FASD at 14, it only really hit her when she was 17 and all her friends headed off to college. "My mom said, 'You're not there yet.'"

On the phone this week from Clare, she reveals she is just back from Washington, where she was giving a talk to raise awareness of the condition. Although a little later than her school friends, she did go onto the 'college experience' and now works part-time in FASD Ireland, along with giving webinars and talks about the condition all over the world and running an online support group. When she first typed the term 'FASD' into Google, she was 'terrified' by headlines about individuals with FASD being more likely to end up in jail. "Individuals firstly have very little impulse control, so very often we don't understand consequences, and also we are very easily manipulated," she said, but added: "There are also stories of people with FASD who have become doctors, who are writing books, who have won awards. I was like, actually, no, I can grow up and be something positive."

In understanding the condition, she points to the anger that individuals. can feel when they get a diagnosis. "There is grief and loss involved for parents whose child is never going to be like a neurotypical child, who may need extra support for the rest of their life. But then there's also grief and loss for the individuals themselves, knowing that they're always going to have challenges, there's always going to be struggles." With her own family, there was an unspoken acceptance on both sides helped by the 'great relationship' between her birth mother and her adoptive mother. "She knew I had a diagnosis of FASD. I knew that it was her drinking that had caused it. We kind of in ourselves reached an awareness of each other where she knew I didn't have any grievances or hate towards her,' McHugh said. "She was an alcoholic. And she grew up in a support network of alcoholics. At that time, there is no information about FASD and in fact doctors were recommending women drink to [ease] an iron deficiency. She wasn't given the help that she needed. She got turned away a lot. My mom never set out deliberately to cause me to have a disability. And for me to hold that against her is unfair. She passed away four years ago. I'm so lucky - I had two mothers and two families." McHugh believes that the stigma about drinking alcohol during pregnancy contributes to women not wanting to admit their habits, which otherwise would help with diagnosing the condition.

Tobin has conducted a new Trinity College study, due to be published in the coming weeks, surveying 70 care-givers of children and young people with FASD. Thirty-six per cent were adoptive parents while 40 per cent were foster parents. If those diagnosed 76 per cent, or 37 people were diagnosed in Ireland. Tobin said Ireland needed national guidelines on diagnosis and a defined care pathway with formal supports. Tristan Casson-Rennie, the director of FASD Ireland, has called for a specialist clinic to be set up to diagnose children with symptoms. "On average those diagnosed in Ireland saw three healthcare professionals on their journey to diagnosis,' Tobin said, adding at least one child saw up to eight professionals. She pointed to a study presented at a recent international conference that examined MRIs of foetuses prenatally exposed to alcohol, showing that brain changes were detectable even at low levels of alcohol exposure. She said: "The takeaway of public health message is that there is no safe amount of alcohol use in pregnancy. Even small amounts can lead to changes in brain structure."

McHugh offered a simple last message: "Nine months might seem like a very long time to not drink, but if it reduces the risk of your child having to have a lifelong disability, I think it's worth it."

The HSE's best available evidence estimates about 600 Irish babies are born each year with foetal alcohol syndrome, with up to ten times the number of babies born annually in Ireland who have other foetal alcohol spectrum disorders. "The majority of these children will have no visible signs of disability at birth and difficulties may not manifest until preschool or school age. As there is no register of persons with neurodevelopmental disorder in Ireland, no up to date data are available on cases of FASD in Ireland," the HSE said. "The HSE encourages pregnant women, and women planning a pregnancy, to have an alcohol free pregnancy. Even a small amount of alcohol at any stage of pregnancy can harm a baby's development and may have lifelong effects such as FASD."

The original article can be viewed here . Please note that this is behind a paywall.

‘I was called a naughty child – but it was caused by my mother drinking when she was pregnant with me’

Sat, 03 Dec 2022 12:59:05 GMT

‘I was called a naughty child – but it was caused by my mother

drinking when she was pregnant with me’

A teenager has told how he was labelled a “naughty child” and accused of “messing about” before he received a diagnosis linked to his mother drinking alcohol during pregnancy.

Jacob Casson-Rennie (16), a fifth-year student from Ennis in Clare, is one of more than an estimated 244,000 people in the country who were born with foetal alcohol spectrum disorder (FASD), an incurable neurodevelopmental condition as a result of the brain being damaged by alcohol in the womb. "I think the whole way through primary school I had no notion of what was causing anything to be honest," he said.

He is one of three adopted children of Tristan Casson-Rennie who last year set up FASD Ireland, a non-profit social enterprise, to try to promote more understanding and support for children and adults with the condition. In a response to Aontú leader Paedar Tóibin, the HSE estimates that around 600 babies are born at the severe end of the disorder and up to 6,000 more annually who are on a spectrum but he said the true estimate is unclear.

Mr Casson-Rennie said: "Around 13pc of women who drink alcohol during pregnancy will have a child with FASD. But the true scale of the numbers living with the disorder is not known. Two in five pregnancies are unplanned and until they find out, women are unaware of the impact of their drinking. There is no blame involved. No woman sets out to harm her baby. The best way to diagnose a child with FASD is between the age of five to 11. However there is no special pathway to diagnosis and no specialist FASD clinics here. Children are slipping through the cracks. Based on World Health Organisation (WHO) estimates for Ireland of 47.5 cases per 1,000 population there are at least 244,000 people with FASD in Ireland, but that could conservative," he added.

The HSE said people with FASD experience lifelong challenges and may need support with many aspects of their health. They may struggle with learning, memory, attention, communication, emotional regulation and social skills. It can cause learning difficulties and behavioural issues for a child and they may struggle getting along with other people and have emotional and mental health problems. They may also be smaller than expected and have problems with eating and sleeping.

Jacob explained that he has problems processing so it takes time to register an instruction. "We call it the 21-second delay," he said. "It takes time in between an instruction to then getting it done. So I have a habit of saying 'no' to a lot of things I am asked - not 'I am not going to do this' but 'no, my brain hasn't fully processed what you have asked me to do yet'. I need time to give you the answer I want to."

He is fortunate in having a supportive special needs assistant (SNA) and teachers in Rice College in Ennis "who are more than happy to repeat it again and explain in a different way so that I can understand." On the rugby field he is a very good rugby player but at the height of the game he must remember to be in a certain place and "I tend to get really frustrated and then I tend to get cards and stuff." But he credits his coach with learning how to respond appropriately. When he explains to his friends about his condition , they say "wow, that makes a lot of sense."

While Jacob is fortunate, his father knows other children are lost in the system. Mr Casson-Rennie said FASD Ireland is now providing free tutorials every week to SNAs to give them insights into the condition. "The system needs to change. The child cannot change," he added. He said Junior Minister Josepha Madigan has been very helpful but the wider education system needs to become involved. It can make a difference between a child with the unrecognised disorder in a mainstream class being constantly sent to detention or even expelled. They can end up with a diagnosis of some sort such as attention deficit disorder and receive some support in school but without any knowledge they have FASD. Mr Casson-Rennie added: "Without recognition of FASD or training in how to support the condition, we have a 'square peg in a round hole' situation. Most of these children and young adults slip through the cracks and often leave education immediately after Junior Cycle as a result - that's if they haven't been excluded by this point in their education."

His organisation has now been awarded funding by Social Entrepreneurs Ireland to provide a national FASD hub for Ireland so that families, carers and professionals are able to access information, support and advice. It will launch in the first quarter of next year and set up a helpline to allow anyone with questions to ring them for information.

While driving over the alcohol limit and smoking during pregnancy are taboo, he feels not enough emphasis is put on the risks of alcohol and mothers to be. If he had his way, there should be a poster on every bathroom door in pubs and licensed premises advising women who may conceive or are pregnant about the risks of alcohol.

As the festive party season approaches, the HSE has provided some tips for pregnant women to avoid drinking. These include:

Planning alcohol free activities and looking ahead and avoiding triggers, including people and places which encourage drinking

Ask partners, friends and family for support

Find new routines that don't include alcohol

Get support from your GP, midwife or obstetrician.

The original article is located here . Please note a paywall is active.

Washington DC

Tue, 22 Nov 2022 13:49:18 GMT

AUCD Health and Equity Conference in Washington DC, USA.

As someone living with Fetal Alcohol Spectrum Disorder (FASD) I never imagined I would get some of the amazing opportunities that I have and particularly one in the area I adore and is my passion, which is FASD Advocacy, Educating, Supporting and talking about my own personal lived experience.

Recently I was offered a huge opportunity to do something I had never done before and that was to attend and co-present t he Association of U niversity Centers on Disabilities (AUCD) conference in the USA. Living with FASD I knew that there were going to be many challenges that I would need to o vercome , but I was excited to do that as it was another step towards a little more independence. M uch of the organisation o f flights and accommodation bookings were done by the individuals I was co - presenting with , which took a lot of stress away - as that Is something I would have struggled with.

For me what caused me the most anxiety wasn’t the long 8hr flight or meeting up with people I had only ever worked with on zoom, but it was the packing and a lot of the anxiety I think was my tunnel vision that I was terrified of sticking out or not looking the part this caused a lot of daily unpacking repacking before the trip as my anxiety would get the best of me.

The day of the flight I had gotten a handle of my anxiety of not fitting in or packing the right amount of clothing and I had decided if I forgot anything not much I can do about it now. After a 3hr drive to Dublin Airport we arrived I had made sure to wear my Sunflower Lanyard as someone with a hidden disability who gets sensory overloaded, severe anxiety and panic attacks and also has zero sense of direction the airport is a lot to handle so knowing that this airport recognised the Sunflower Lanyard and what it meant eased a little of my anxiety. When I explained to the flight agents they were more than helpful ensuring that I didn’t have to stand in the long noisy lines and made sure to explain to me all the process so that nothing would be a surprise and honestly that was one of the highlights of the trip was for the first time I had a positive experience in the airport environment where I wasn’t left drained and just an anxiety mess.

The AUCD Conference itself was inspirational to be in an environment where people want to learn about, and I mean really learn about all disabilities physical and hidden disabilities and they wanted to hear from the lived experience from the people themselves and wanted to know in what areas improvements need to be made researchers asking the questions on what they are missing and how can they improve and make things easier for individuals with disabilities. In America FASD is recognised and to a certain degree supports are in place so to be able to tell people that I have FASD, and they knew what it was. I didn’t need to explain and educate them which is what I am so used to doing in Ireland when I tell people what my disability is was very refreshing.

The conference gave me a lot of hope for the future and the importance of advocating and getting officials to accept that ' nothing about us without us' is the future ; that individuals shouldn’t be just talked about and their disability referred to, but that actually hearing lived experiences their daily challenges how they have overcome or found strategies that work and how they cope when there are little to no supports . H earing that will d rive change and get the world to realise having a disability isn’t all negative and that with the right support and help we can be like everyone else . We have that right to get the same opportunities as the people around us who don’t have any disabilities get . Why can’t those of us with disabilities get the same. Equality and Equity is the key.

I was fortunate enough that I was able to attend the FASD United Red Shoe Gala where I was able to see how much work goes into ensuring that the organisation is able to continue to offer resources and also knock on those policy makers doors to get them to stand with them in recognising FASD. Allocating more financial aid would go to more individuals to help them get a diagnosis and the right support. It was a very successful evening and it also raised awareness of Ireland, and the hard work that is being done in Ireland to bring awareness, education and advocating for people with FASD.

This trip was hopefully the first of many and I really look forward to more adventures to come; and yes, I know I’ve left out parts of my experience of this visit. If I had put everything in this blog It would have turned into a book! This trip was full of overcoming challenges and just enjoying all the experiences.

FASD Awareness Webinar #12 - Andrew Keeping interviews Tristan Casson-Rennie

Sun, 20 Nov 2022 13:26:09 GMT

FASD Awareness Webinar #12 - Andrew Keeping interviews

Tristan Casson-Rennie

Tristan Casson-Rennie is an adoptive parent with his husband Scott, to 3 sons. After many years working in the rail industry Tristan took early retirement in 2014 and swapped roles with Scott to become a stay at home Dad to their newly placed third son, who has FASD. Returning to Ireland in 2018 Tristan noted the lack of any awareness of FASD across the country and frustrated, began his attempts to educate and raise awareness, which resulted in the launch of FASD Ireland on September 9th 2021.

Hear directly from Tristan about his and Scott's journey with their child with FASD and what led them to set up a new FASD organisation in Ireland which aims to reinvigorate and educate and to put some fire in the bellies of the people who can make decisions so that support can be provided for the young people, children and young adults, that live with FASD.

FASD Ireland awarded 'Seed Funding' for National FASD Hub for Ireland by Social Entrepreneurs Ireland Ideas Academy

Sun, 30 Oct 2022 13:29:15 GMT

FASD Ireland awarded 'Seed Funding' for National FASD Hub for Ireland by Social Entrepreneurs Ireland Ideas Academy.

We are delighted to announce that FASD Ireland has been awarded €6,500 towards the establishment and pilot of the National FASD Hub for Ireland by Social Entrepreneurs Ireland Ideas Academy. Thank you to everyone at Social Entrepreneurs Ireland - especially Lydia Redmond & Éabha Harper-McKeever for all of the support and guidance over the summer whilst our CEO Tristan Casson-Rennie participated in the Ideas Academy for FASD Ireland

This 'seed funding' will support the establishment of a National FASD Hub for Ireland, and plans are already in place for this essential helpline to go live during Q1 of 2023.

The National FASD Hub for Ireland will provide much needed support, signposting, advice and advocacy for families living with Foetal Alcohol Spectrum Disorder, as well as professionals working in support agencies, education and healthcare.

Sincere gratitude to this year’s sponsors Bank of America and Life’s 2 Good Foundation for supporting the Ideas Academy this year. Your generosity IS changing lives across the country.

Why does Ireland have so many cases of foetal alcohol syndrome?

Tue, 06 Sep 2022 12:12:24 GMT

Why does Ireland have so many cases of

foetal alcohol syndrome?

Ireland is estimated to have the third-highest prevalence of FAS in the world, with about 600 babies born here each year with the syndrome.

The unequivocal message that no amount of alcohol is safe for a foetus at any stage of pregnancy is a challenging one to deliver in our drink-fuelled culture.

Ireland is estimated to have the third-highest prevalence of foetal alcohol syndrome (FAS) in the world, behind Belarus and Italy. About 600 babies are believed to be born here each year with FAS, which is the most severe and visibly identifiable form of a group of alcohol-related birth defects known as foetal alcohol syndrome disorders (FASD).

For every baby born with FAS, there are likely to be another nine or 10 babies born annually for whom FASD is a hidden disability. Their neurodevelopmental issues, due to the toxic effect of alcohol crossing the placenta, will not become apparent until around ages five to 10 years.

Drinking alcohol during pregnancy is the single greatest preventable cause of neurodevelopmental disorders, says public health consultant Dr Mary O’Mahony, who is the national clinical lead on FASD prevention. But she believes the focus needs to be on the consumption of alcohol generally, with 2019 figures from the World Health Organisation putting Ireland at sixth highest in the world in that regard.

“The likelihood of you drinking during pregnancy is based on your drinking pattern before you got pregnant,” she says. In the case of the 40 per cent of pregnancies in Ireland which are unplanned, “you will be pregnant before you realise you are pregnant and your normal drinking pattern will have continued”.

It takes only 67 women to drink during pregnancy for one child to have FAS and just 13 women to drink during pregnancy for a child to be born with FASD, she says, citing research based on a systematic review and meta-analysis of studies, published in the Lancet in 2017. The greater the quantity consumed the higher the risk but parents-to-be are advised that only cutting out alcohol can eliminate that risk. For researchers in this field, the gold standard for studying causal relationships, randomised controlled trials, are not possible because clearly it would be unethical to administer alcohol to some pregnant women to quantify the risks better.

It’s almost 50 years since the term foetal alcohol syndrome first appeared in an article published in the Lancet in 1973. A group of US paediatricians and psychiatrists used it to define facial abnormalities and developmental delays they were observing could occur in babies born to alcoholic mothers. Since then, the more that is learned through neuroscience, the more compelling the case for avoiding exposing unborn babies to any alcohol. Canada and Australia have led the way in addressing the problem, due to high rates of alcohol use in their indigenous populations.

Before we knew any better, doctors in Ireland used to recommend Guinness to pregnant women as a source of iron. In more recent times, there was a perception that the real risk from alcohol was confined to the first trimester, when the structure of the brain is developing. “We now know that is actually wrong. Alcohol at all stages can affect the brain of the developing foetus,” says Dr Aisling Sheehan, head of the Health Service Executive’s alcohol programme. Yet, expectant parents will still hear mixed messaging, not only from family and friends but even from some health professionals.

A 14-point action plan for the prevention of FASD, due to be presented to the board of the HSE in mid-September, includes steps to raise awareness not only among the public but also through training of professionals. Meanwhile, Sheehan is keen to use International FASD Day on September 9th to flag not only the risk of the “hidden disability” but also other dangers that come with the consumption of alcohol in pregnancy, including miscarriage, stillbirth and preterm birth.

“Health professionals need to be better informed about alcohol generally and FASD specifically,” says Dr Hugh Gallagher, a GP who specialises in addiction medicine and is a member of the HSE’s FASD prevention expert advisory group. He would like to see GPs introduce screening for alcohol use among all patients and to routinely advise women that “if they are planning or hoping to become pregnant, they cease alcohol and remain alcohol-free subsequently [through the pregnancy]”.

This should not be seen as some sort of paternalistic or punitive approach to women, he stresses, because this information is very important and knowledge changes attitudes. “It is not about shaming, punishment and fear — it’s quite the contrary. It’s doing a disservice to women to be denying them this information, in terms of prevention especially.”

Where the problem of FASD already exists in the family, an awareness of why and the availability of appropriate timely interventions are needed. Although the expert advisory group’s remit is prevention, it is also seeking better recognition, early intervention and supports for the estimated 4.75 per cent of children who are affected. O’Mahony says they are looking at 19 areas where support could be introduced or increased. There is no neurodevelopmental disorder register in Ireland but Gallagher refers to a study in Manchester that suggested the prevalence of FASD is twice the rate of autism spectrum disorder.

At the extreme end, babies with FAS will be born smaller than expected, says O’Mahony. Facial features include small eyes, a thin upper lip and the lack of a vertical groove between the nose and lip. However, she continues, “a child born with FASD will be of expected birth weight and will look normal. For some of them it’s only when they get into the problem-solving years of national school — third and fourth class — that their deficits will start to manifest. Invisible deficits would be attention and memory deficits; difficulty with abstract concepts such as maths and time; poor problem-solving skills; and difficulties learning from the consequences of their actions.”

One of Tristan Casson-Rennie’s adopted children has FASD and it was his family’s experiences that prompted him to set up a support organisation, FASD Ireland, in September 2021. (It has no connection with a previous group operating under the same name.)

“I have endured several years of frustration not being able to get recognition for my son’s condition. After a lot of challenges I decided obviously I wasn’t the only parent going through this,” he says. However he notes his family has been “absolutely blessed” in having a really good Camhs unit locally, in Ennis, Co Clare.

As Chief Executive of FASD Ireland, he has been surprised at the level of interest it has attracted over the past year, not just by parents but also professionals such as teachers and social workers keen to learn more. The organisation would encourage any couple trying for a baby to both stop drinking alcohol, to support each other. Actor Russell Crowe, Prince Harry and Boris Johnson are among public figures who have declared they abstained from alcohol during a partner’s pregnancy.

One of the key issues for families dealing with FASD, says Casson-Rennie, is that it is not recognised as a disability in this country and the National Council for Special Education doesn’t see it as a condition that requires SNA support. “Families are struggling right now; they cannot get a diagnosis, they cannot get recognition and they cannot get help — from health, education and welfare.”

He talks about “the difficult conversation” that he believes health professionals are inclined to sidestep if FASD is seen as a possibility. A potential overlap between it and autism and ADHD is particularly sensitive.

In the broader context of alcohol use, Sheehan says, “we know from research that healthcare professionals find it more difficult to talk about alcohol than other topics such as smoking and physical activity. There is a wider issue in society that we need to tackle.”

She also acknowledges the stigma that potentially comes with a diagnosis of FASD — “There are not many other diseases that would have what caused it in the name. It can be really difficult for birth mothers.” Most of the people that they come across with a diagnosis are families who have fostered or adopted children.

“We know that the children are there — they are in our existing disability, mental health, paediatric services, just not necessarily with the diagnosis of FASD,” she adds.

As to those most at risk of having a baby with FASD, O’Mahony says these include women who have enough disposable income to keep alcohol in the house. “It is often the educated, professional women who continue to drink during pregnancy.” Students and those in lower socioeconomic groups are also vulnerable on the basis that they are more likely to binge drink.

She has proposed to the National Screening Advisory Committee that screening for alcohol in pregnancy be introduced to enable appropriate conversations, or the provision of supports and follow-ups, where necessary. It is already policy, under the maternity strategy, to have drug-alcohol liaison midwives in every maternity hospital but that has not yet been achieved everywhere outside Dublin.

A pregnant woman’s urine is checked at every GP or hospital visit, O’Mahony points out, so this could be used for screening.

“It’s about helping, not blaming,” she adds, reiterating that ultimately we have a societal problem. “As a country we really have a difficulty with alcohol and the best way we can reduce FASD in children is to bring our alcohol consumption right down.”

‘Everyone knows someone with FASD’

A mother of two children with foetal alcohol syndrome disorder (FASD), who wishes to remain anonymous, outlines the impact on their daily lives:

Our morning routine has to be like clockwork, to avoid any meltdowns. Trying to keep things as calm as possible has proven to be the best strategy. Many children with FASD have major problems with sleep; our eldest tries his best not to sleep if he can help it, which results in behavioural problems. He’s better now than he was, but it’s still a big struggle for him.

Over the summer we have been practising with them to put their cereal in their breakfast bowls by themselves. It does seem strange at their ages (preteens now) that they are only at this stage. Like all children with FASD, their adaptive functioning skills are way behind their chronological ages.

The impact of being exposed to alcohol in utero also means they have many physical conditions, including very poor muscle tone or hypermobility, which impacts on their ability to lift, pour, carry, all of the mundane tasks we take for granted. We scoured shops for just the right shape and size of container to put the cereal in so that it was easier for them to lift and pour. They haven’t yet mastered pouring in the milk — we haven’t yet found the right jug!

We ensure the two of them use the bathroom and eat their breakfast separately because being in the kitchen or bathroom together can be quite chaotic. Extreme sensory issues associated with FASD means that basic hygiene such as teeth brushing and washing hands is a huge deal, requiring a lot of instruction and reassurance. Getting dressed can be a struggle, especially if buttons or zips are involved, as the poor muscle tone in their fingers makes it very challenging.

Our children have no concept of time. Any kind of pressure to hurry up can result in a meltdown, as they seem to internalise it intensely. Throw mobility problems and lack of spatial awareness into the mix and preparing them to get out the door and into the car without an incident is a daily challenge.

To look at our children, the needs aren’t obvious. It’s hard when we get strange looks from other parents due to our two squabbling over a game or toy designed for much younger children. Social skills are an issue, coupled with poor emotional regulation.

Children with FASD don’t understand consequences, neither do they respond well to typical rewards, much to the dismay of the “Supernanny star chart” brigade. They don’t get anything abstract so don’t learn the same way as other children with hypothetical situations. Explaining “If you do this then this can happen, etc” is met with a dead-eyed glazed look.

Children with FASD also have many cognitive deficits, such as processing delays. This is especially true of instructions: they literally miss some of the words being said, and hence may do the opposite of what they’re being asked. This can look to the uninitiated as defiance. Teachers can’t believe that these overly sociable and verbally articulate (as many children with FASD are) children can have any serious cognitive deficits. The children are very adaptable in groups and will copy and mimic what their peers are doing, making it even more difficult to explain the challenges to teaching staff who receive minimal training in special education needs and zero training in FASD. This means every incident following sensory overload or a lack of understanding due to processing delays, is met with disciplinary action.

Even though we have professional reports stating our children’s needs, challenges and requirements, and professionals have spoken to the schools on our behalf, we are met with: “Well, we’ve never come across this type of disability before.” Considering how Ireland rates globally regarding alcohol consumption during pregnancy, we know that schools are coming across it, they just aren’t recognising how it presents in behaviour and learning challenges.

With heavy hearts, like many parents of children who require additional support, we’re starting to accept that ours may never be able to live independently. They are charming, funny, resilient and determined and have masses of potential but, due to a totally preventable condition which has damaged their brains irreversibly, we know the odds are stacked against them. With no pathway for assessment or diagnosis of FASD in Ireland we have been forced to seek and pay for services abroad. Meanwhile, with so much time being taken up with tending to the children’s care needs, trying to navigate the health and education systems to gain the required support, and research and implement strategies, both of our careers have had to be put on the back burner, impacting on earnings and causing further stress.

We try to stay as positive as possible and not get too overwhelmed with worries about the future but it is a major concern. What would greatly help is for all professionals involved with families, including GPs, nurses, healthcare staff, paediatricians, teachers, SNAs, childcare workers, social care workers, etc, to have FASD training and to listen to parents’ concerns. More importantly, all relevant government ministers and their departments should educate themselves on the issues involved.

Everyone in Ireland knows someone with FASD; you just don’t recognise it.

The original article is located here .

FASD Headquarters and Training Centre opened by Minister of State for Disability, Anne Rabbitte TD

Wed, 31 Aug 2022 12:21:30 GMT

FASD Headquarters and Training Centre opened by Minister of State for Disability, Anne Rabbitte TD

On Wednesday 31st August, the Headquarters and Training Centre of FASD Ireland located at 51 O’Connell Street in Ennis, County Clare were officially opened by Minister of State for Disability Anne Rabbitte TD.

Guests included Clare Colleran Molloy (Mayor of Ennis), Margaret O’Brien (CEO Ennis Chamber of Commerce), Cathal Crowe TD and Senator Timmy Dooley. There were also representatives from the HSE, Ennis CAMHs and Rice College, as well as the Haven Hub and NOVAS.

The event commenced with a welcoming speech from Tristan Casson-Rennie, CEO of FASD Ireland, and this was followed by an introduction to the Hidden Disabilities Sunflower Scheme by Paul White, CEO of HDSS.

Mayor Clare Colleran Molloy extended her welcome to the town of Ennis and shared that she also has a hidden disability and was very pleased that both FASD Ireland and Hidden Disabilities Sunflower has chosen Ennis as a base.

Cathal Crowe TD, a former primary school teacher, spoke about his experience of FASD and hidden disabilities in the Classroom and in public life, as well as reflecting on the early days of FASD Ireland and how he was both supportive and encouraging growth of the social enterprise.

Minister Rabbitte shared her views of the importance of recognising FASD, and also her concerns that Ireland needs to take note of a simple message: Alcohol should not be consumed whilst pregnant. Minister Rabbitte went on to say “We are ready for the Sunflower, I think Ireland is in a really positive space when it comes to disabilities at the moment.”

Minister Rabbitte concluded her speech by unveiling a plaque commemorating her visit to the offices.

Tristan Casson-Rennie said “We were honoured to have Minister of State for Disability Anne Rabbitte and so many people involved with FASD attend our official opening. Minister Rabbitte’s speech recognising FASD as a disability gives hope to the many thousands of people in Ireland living with FASD”

FASD Ireland gave guests advance screening of their campaign that was launched on 1st September across all major social media platforms to recognise World FASD Awareness Month. This is titled “You never drink alone when you are pregnant” and gives advice that if you are thinking of having a baby or are already pregnant, then you should stop drinking alcohol.

Ireland Budget 2023

Sun, 31 Jul 2022 14:25:43 GMT

With the 2023 budget on the horizon, what is FASD Ireland doing to help families living with FASD?

Minister Paschal Donohoe is due to produce the 2023 budget two weeks early on 27th September as a result of the cost of living crisis that Ireland - and the rest of the world - finds itself in. It is said that this budget

" will balance helping people with protecting the economy. " So, with the promise of "helping people" this year's budget is of particular importance to families living with FASD.

FASD Ireland has sent a budget submission to Minister Paschal Donohoe for consideration. We expect that it is the first time that Foetal Alcohol Spectrum Disorder will have been considered in any Irish budget. This is important for a couple of reasons:

Essentially, FASD Ireland is proposing that an entirely new support framework needs to be established:

We have asked Minister Donohoe to work with Minister Stephen Donnelly (Health) to provision funding for a National Clinic for FASD to be operated by the HSE, so that families are no longer directed to or have to pay for a referral and join the lengthy wait list to the UK's FASD Clinic in Surrey. Ireland is the only country in the developed world NOT to recognise FASD and to have a specialised clinic where a diagnosis can be obtained. Reflecting that FASD is a country-wide issue, we would like this clinic to be centrally located in the midlands, close to railway/bus and motorway access to ensure that no family has to travel from one side of the country to the other in seeking and obtaining a diagnosis.

We have asked Minister Donohoe to work with Minister Josepha Madigan (Special Education Needs and Inclusion) and make a provision for additional funding to the NCSE, which will allow them, for the first time, to recognise FASD as a life-long neuro-developmental disability AND to provide SNA support so that children and young people with FASD can be supported into mainstream education. This will ensure that children and their families will have the right support in schools for their condition - not falling through the cracks and subsequently excluded from Education.

We have asked Minister Donohoe to work with Minister Anne Rabbitte (Disabilities) to provision funding a National FASD Hub for Ireland, which FASD Ireland already has proposals to to open during Winter 2022. This will allow for a 7-day/week telephone helpline for families, young adults, educators, employers, social workers and practitioners to call for help, signposting and advice. The National FASD Hub for Ireland will also engage in Public Health Campaigns to prevent FASD jointly with the HSE, as well as delivering training to educators and social workers about FASD Awareness and how to support young people and families living with FASD.

As is so often the case with FASD, providing support needs people to work together, to make that leap of faith and abridge unexpected challenges. Supporting FASD requires cohesion from multiple agencies.

It is now time to start building the scaffolding that will support the estimated 247,000 people living with FASD in Ireland.

Notes:

There have been many requests and attempts for an up-to-date and accurate FASD prevalence survey in Ireland. Whilst the latest numbers we may use are from a WHO estimate carried out in 2017, we recognise they are still only an estimate. The numbers we quote most often are that 600 babies each year are born in Ireland with FASD; and that 4.75% of population in Ireland have FASD. Finally, 82% of women in Ireland drink alcohol whilst pregnant. All these numbers rightly shock to the core, however, we must remember that they are all now 5 years out of date, and sadly we expect the numbers to have increased..

If a person is diagnosed with FASD in Ireland - which is unlikely given the lack of a diagnosis pathway - then currently they are excluded from any support in Education as FASD is not recognised as a disability by the NCSE. Whilst this in itself is in direct contravention of the Equal Status Acts 2000-2018 (Education), it is the reality of lived experience, and as a result practitioners are being slewed towards a diagnosis with secondary or co-morbid conditions including ASD, ADHD and Tourettes, to ensure the young person receives some support. Until this anomaly is addressed by the NCSE, the numbers of people diagnosed with or expected to have FASD will continue to be unrealistically low.

Sunflower Conversations with Chantal from Hidden Disabilities Sunflower Scheme

Thu, 14 Apr 2022 12:26:40 GMT

Sunflower Conversations with Chantal from

Hidden Disabilities Sunflower

Jan Griffin a birth parent of a child with FASD and Tristan Casson-Rennie, CEO of FASD Ireland joins Chantal from the Hidden Disabilities Sunflower Scheme to talk about all things FASD.

We discuss what FASDs are, some of the features and characteristics of FASD, many of the concerns around education, and what it is like being both a birth parent and an adoptive parent of a child with FASD.

Click HERE for more information about the Hidden Disabilities Sunflower.

NearFM - Darren J Prior talks to Tristan Casson-Rennie about FASD Ireland

Thu, 10 Mar 2022 13:33:05 GMT

NearFM - Darren J Prior talks to Tristan Casson-Rennie

about FASD Ireland

Near FM 90.3 is Community Radio for NorthSide Dublin

website or twitter

Cork 96fm Opinion Line - Interview with PJ Coogan

Fri, 04 Mar 2022 13:36:58 GMT

Cork 96fm Opinion Line - Interview with PJ Coogan

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Foetal alcohol syndrome survey is 'first of its kind'

Sun, 09 Jan 2022 13:42:11 GMT

Foetal alcohol syndrome survey is 'first of its kind'

ANN MURPHY

Sunday 9th January 2022

A survey is being conducted to establish the experience of people living with or caring for someone with foetal alcohol spectrum disorder in Ireland. The move coincides with the introduction of minimum unit pricing for alcohol in recent days and against a backdrop of an estimated 600 babies a year being born here with FASD.

The research is the first of its kind in Ireland and is being conducted by Dr Katy Tobin of Trinity College Dublin in collaboration with Alcohol Forum Ireland and ENDpae, a support group for parents and carers of people with the disorder in Ireland. The study is also being promoted by recently-established FASD Ireland, set up in September to support children, young adults and families with the condition.

Dr Tobin said the research has been funded by the Irish Research Council under a New Foundations grant.

She said: “It is aimed at families – primarily at the parent or caregiver, to give their experience of caring for someone with FASD.

Limited research

We have very limited research in Ireland regarding FASD.” She said it is difficult for a proper diagnosis of FASD to be made in this country and there are no concrete figures available on its prevalence.

The most recent figures were published by the World Health Organisation in 2017 and estimate that approximately 600 babies are born each year in Ireland with the syndrome. Ireland ranks third out of 187 countries for prevalence of FASD, behind South Africa and Croatia.

Dr Tobin said: “The survey asks about the diagnostic journey and it looks at the cost involved in getting a diagnosis as well as the costs of caring for someone with FASD.” It also looks at how someone with FASD is catered for in society, including in education, as well as the experience of carers and parents.

Dr Tobin said similar research has already been undertaken in England and Scotland. The survey got underway in November and will conclude later this month.

Founder of FASD Ireland, Tristan Casson-Rennie, said while the introduction of minimum unit pricing for alcohol was to be welcomed, is only one part of alcohol legislation that needs to be implemented.

He said: “The pricing is a part of what needs to happen. From an FASD point of view, the important action of the Public Health Alcohol Act 2018 was product labelling. That still has not happened."

"Section 12 of the act is very specific in that it requires bottles of alcohol to be labelled that if you are pregnant or trying to conceive, you must not drink alcohol."

"That has not happened and the latest estimate for that happening is 2024 which is very annoying given that we as a nation need to minimise the risks to babies being born. That public health campaign should be ongoing, irrespective of legislative proceedings.”

In 2020, the Australian and New Zealand Ministerial Forum on Food Regulation decided to introduce mandatory pregnancy warning labels on alcoholic beverages." "

Mr Casson-Rennie added: “Every year that we lose, even on a conservative estimate, is 600 babies a year being born with FASD. As a society, we simply cannot afford the costs that come with supporting these children and young adults through life, caused by alcohol use during pregnancy or when trying to conceive a baby.” Parents and caregivers wishing to take part in the study can do so here .

Link to original article here

Is the NCSE still fit for purpose?

Fri, 10 Dec 2021 15:47:38 GMT

We have unearthed some astonishing facts this week...

It is highly probable that some of you reading this will have never heard of the National Council for Special Education, or as it is more widely known as the NCSE. This vital cog in the wheel of providing support for children and young people with Special / Additional Educational Needs (S/AEN) is more than a little obscure from most parents. Unless you have had any interaction with a Special Educational Needs Co-ordinator (SENCo) in school, then you will rarely come across or have any contact with the NCSE at all during your child's education.

So what does the NCSE do? Essentially the NCSE sits inside the Department of Education, specifically within the remit of the Minister of State for Special Education and Inclusion. The NCSE was established in 2003 to improve the delivery of education services to people with special education needs (SEN) arising from disabilities, with a particular emphasis on children. A local service is provided through a national network of Special Educational Needs Officers (SENO's) who interact with parents and schools and liaise with the Health Service Executive (HSE) in providing resources to support children with special educational needs.

Sounds great doesn't it? But does the NCSE actually achieve what it set out to do?

Consider this. A child starting primary school in September is identified by their teachers as having S/AEN. A meeting is held with parents and would usually include the class teacher and SENCo. A decision is made to refer the child to Child and Adolescent Mental Health Service (CAMHs) for a community paediatrician to undertake a clinical assessment of the child. A further referral may be made to an Occupational Therapist (OT) by CAMHs. A diagnosis may or may not follow. A multi-agency meeting will take place to discuss support arrangements in the school using existing limited resources. The SENCo will then consider if a Special Needs Assistant (SNA) is required to support the child in school and will make an application to the NCSE for funding using the 'Exceptional Review' process. The NCSE will usually require reports from the teacher, SENCo, CAMHs, OT and often by an Educational Psychologist from the National Educational Psychologist Service (NEPs) There is also a form to be completed by parents or carers of the child.

The application takes a couple of weeks to put together; co-ordinating reports from agencies takes time. The application is submitted to the local SENO, who usually, but not always has knowledge of the school and experience of working with the SENCo. The application process is so cumbersome that if the application is incomplete, then it will simply be rejected outright and closed down rather than any request for further information.

Often no one will get told that this has even happened!

Providing all of the information with the application is in order, an assessment will take place. Often the SENO will visit the school to see the child in-situ and to examine any further paperwork held on file. The SENO will finally make a recommendation to fund an SNA position, however that may be a part or whole position. However, unlike the application process, the SNA allocation is not specific to the child, but to the school. The NCSE is unable to ring-fence the SNA to the child, and must allow the school's Board of Management (BOM) together with the Management to decide how best to use the SNA in the school.

It would not be unusual to have reached mid-December. So three months has elapsed where the child has not been fully supported. In a young child, starting primary school, three months during early education is a lifetime.

There are some serious flaws in this process.

Now, let's roll forward to a new child starting at the same school the following September.

The process for the school is to apply for an 'Exceptional Review' again, except this time both children will be assessed as a new application. School would reasonably submit a request for two SNA positions. This application requires a full review to be carried out internally by the SENCo for each child and their primary care need - in primary care need order (Interesting question arises here. Is the SENCo actually equipped to do this?) A plethora of paperwork is generated for all concerned, some of which will be sent to the parents or carers to complete and with little notice. The exceptional review application for parents is simply not fit for purpose and focusses mostly on a physical disability rather than any type of neuro-developmental disability. There is significant emphasis on "Improvements made by the child in the past six months." This indicates the intention of the form is to consider withdrawing existing support rather than improving it. There is little room for the parent or carer to explain strategies that are working, the impact of the SNA on school and home, or what additional support is needed.

Once the forms are completed, the SENO attends the school, and along with the SENCo will walk around the school to observe the identified children in their classroom environment. The SENCo will make available all the children's academic history and notes around significant events that may be of interest. Any updated reports from CAMHs, NEPs or the OT are also made available. The Exceptional Review is then considered by the SENO upon their return to the office before an adjudication is made.

So, two children, both identified with S/AEN, with professional reports that would recommend full time SNA support for both children. It seems fairly certain that the next letter from the SENO to the school would say "The Exceptional Review has identified that your SNA allocation has been increased to TWO" However in 9 out of 10 cases, this does not happen. Most SENOs are under such funding pressure, that they respond with "Your Exceptional Review has identified that your SNA allocation has been increased to ONE and ONE HALF"

When questioned about this type of outcome recently, this is what a SENO had to say about it:

"I carried out the SER review with another NCSE colleague at *SCHOOL*. This is standard procedure when a request for additional SNA support is made by school management. The school was forwarded all relevant parent consent forms, these forms are forwarded to all schools which apply for additional SNA support.

The decision as to which pupils have access to SNA support is now a decision made by the BOM and Management team in each individual school. This decision is based on Primary Care needs. Individual allocations are not given to individual pupils. Access to an allocation of SNA support is given to a school. The outcome of the review on this occasion was an increase in SNA support. Any specific queries which you may have regarding your child can be discussed with the SENCO at the school.

So essentially, the SENO makes the decision about funding and the SNA support for the child/ren in question, and then passes responsibility for their decision around SNA provision to the school BOM and Management Team. School then has to juggle any deficit in SNA funding.

Also note how the SENO doesn't refer to the amount of increase in the correspondence with the parent. In this case it was an increase of 0.5 of an SNA. This means if all of the children with S/AEN needed a full time SNA, then they will all now lose a share of support with school struggling to decide where to make the cuts.

Finally, and here is the absolute breath-taker!

At the end of Primary School, a young person with S/AEN may have had SNA support for some or all of the previous 5 years of their time in education. Essentially, they will have been supported through their primary education so that they could take part in mainstream education and start their academic journey. So what happens during the transition to Secondary School? The assumption would be that the support would simply continue...

Wrong!

The young person will arrive at post-primary school in September, and work hastily begins immediately for the SENCo to make an "Exceptional Review" application to the NCSE for increased SNA support . This means that the young person can be in post-primary for the first three months without any support whatsoever, and no guarantees of any substantive support going forward after the application.

Imagine that young person, finding themselves in new surroundings, with new students, new teachers and no support at all. It is an incredibly difficult time for every child transitioning schools, however compounded when there is evidenced S/AEN and or a disability

. How on earth can the NCSE claim that they meet their original purpose? Remember this:

"The NCSE was established in 2003 to improve the delivery of education services to people with special education needs (SEN) arising from disabilities, with a particular emphasis on children."

Urgent legislation is needed so that SNA funding provision is unique to the child or young person,

not the school. It should not be for the BOM or Management of the school to decide where best to allocate funding applied for in an individual child's name. The support must continue across transition to any other school that the child attends whether it be a home move or to post-primary.

There should be particular emphasis on recognising all disabilities including neuro-developmental disabilities like FASD, and accepting that they are lifelong without a cure. Improvements come through implementing the right strategies and supports, not because the disability disappears.

The NCSE are failing in every respect.

The NCSE is no longer fit for purpose.

We would love to hear your own experiences of the NCSE and your local SENO. Please get in touch through twitter, facebook or email.

NCSE website can be found at

www.ncse.ie

Support from Deputy Cathal Crowe, TD, County Clare

Sat, 11 Sep 2021 12:44:00 GMT

Support from Deputy Cathal Crowe, TD, County Clare

FASD Ireland - Launch 9th September 2021

Thu, 09 Sep 2021 11:11:14 GMT

FASD Ireland launches - 9th September 2021

This is the video released on our launch day - September 9th 2021 - World FASD Awareness Day.

Hear from our Founder, Tristan Casson-Rennie about the plans for FASD Ireland.

Please help us to get the message out there across Ireland. Like, comment and share!

#LetsGetIrelandTalkingAboutFASD

FASD Ireland News, Media & Blogs

NEAR FM interview with our CEO Tristan

NEAR FM interview with our CEO Tristan

Our CEO Tristan speaks to Marian Herriott at Connemara Community Radio

Our CEO Tristan speaks to Marian Harriet at Connemara Community Radio

Chair of FASD Ireland Advisory Board Kate FitzHerbert talks to Brian Redmond

Chair of FASD Ireland Advisory Board talks to Brian Redmond on The KCLR Daily

Our CEO Tristan on Newstalk 'Let Me Explain' Podcast with Seán Defoe

Our CEO Tristan appeared on Newstalk 'Let Me Explain' Podcast with Seán Defo

Our CEO Tristan interviewed on Castlebar Community Radio

Our CEO Tristan interviewed on Castlebar Community Radio

FASD Ireland reports an increase of families with children aged under 6 living with FASD

In memory of Alli MacNamara

In memory of Alli MacNamara

Budget 2026 Fails People Living with FASD and Ignores Alcohol Related Harm

FASD Ireland responds to Budget 2026

FASD Awareness Month & International FASD Awareness Day 2025: A Landmark Month for Change

FASD Awareness Month & International FASD Awareness Day 2025: A Landmark Month for Change

FASD Ireland Launches Groundbreaking RCSI Research on International FASD Awareness Day

FASD Ireland Launches Groundbreaking RCSI Research on

﻿ International FASD Awareness Day

Ennis Young Adult With FASD Hails Impact Of Increased Awareness

Ennis Young Adult With FASD Hails Impact Of Increased Awareness

Irish Government bottle it on alcohol labelling

First National Foetal Alcohol Spectrum Disorder (FASD) Conference held

First National Foetal Alcohol Spectrum Disorder (FASD) Conference held

Sam Gardiner RIP (2002 - 2025)

Sam Gardiner RIP (2002 - 2025)

FASD Ireland response to Minister Butler's recent comments about ADHD and Autism

FASD Ireland response to Minister Butler's recent comments about ADHD and Autism

Silent epidemic of foetal alcohol spectrum disorder 'coming down the road at us fast and furiously'

Silent epidemic of FASD 'coming down the road at us fast and furiously'

BLOG POST: 9TH INTERNATIONAL RESEARCH CONFERENCE - SEATTLE, WA

BLOG POST: 9th International Research Conference - Seattle, WA

OVER 9,000 PEOPLE ESTIMATED TO BE LIVING IN CLARE WITH UNDIAGNOSED FASD

Clare County Council has heard calls for training on recognising FASD to be included in the curriculum for third level education.

CORK EAST TD RAISES NEED FOR DIAGNOSIS AND SUPPORT FOR PEOPLE LIVING WITH FASD IN DÁIL

FASD Ireland - Statement on the Incoming Government

Lobbying 2024 wrapped

As we celebrate the New Year, we thought it would be good to look back on 2024.

Avoid the risk of FASD to your baby over the holiday season

Leinster House goes red for World FASD Awareness Day 2024

World FASD Awareness Day 2024 coverage - Leinster House lights up red to support people living with FASD

Clare FM interview - FASD Awareness Day 2024

Morning Focus with Alan Morrissey - Alan interviewed our CEO Tristan on World FASD Awareness Day 2024

Temporary suspension of FASD Ireland services

Temporary suspension of FASD Ireland services

Our reaction to the recent report of the Inspectorate of the Department of Education

FASD Ireland reacts to the thematic report of the Inspectorate of the Department of Education on early intervention classes for children with autism

Mike Taylor joins the FASD Ireland Team

Mike Taylor joins the FASD Ireland team as Director of Policy and Public Affairs

FASD Ireland awarded €220,000 in funding for expansion of its national support hub

FASD Hub Ireland® celebrated its first birthday

Time for celebration at FASD Ireland in Ennis

27th March 2024

Minister for Disability confirms commitment to financially support FASD Ireland

Minister for Disability, Anne Rabbitte TD, confirms departments commitment to financially support FASD Ireland

New Research by Prof Anita Gibbs

New Research - Prof Anita Gibbs

‘No one believed us: no one came to help’: caregivers' experiences of violence and abuse involving children with foetal alcohol spectrum disorder .

FASD Ireland supports open letter calling for a health impact assessment of the Safe Alcohol Bill

FASD Ireland supports open letter calling for a health impact assessment of the Safe Alcohol Bill

FASD Ireland awarded place on Social Enterprise Ireland Action Lab 2023

FASD Ireland selected to take part in SEI Action Lab

New research - Dr Katy Tobin from Trinity College Dublin

New research - Dr Katy Tobin from Trinity College Dublin

Funding success to raise awareness of FASD in Clare Schools

Funding success to raise awareness of FASD in Clare Schools

Let's talk about FASD - Starting a conversation from a National and International perspective

Alcohol label plan praised and criticised

Alcohol label plan praised and criticised

Press Release - FASD Ireland response to Alcohol Labelling

Jeff Noble - “FASD 1oh!1 – Bringing it back to Brain”

“FASD 1oh!1 – Bringing it back to Br ain” - Jeff Noble in Ayr , Scotland ﻿

Salford FASD Conference - Part 2

Our second and final blog about the Salford FASD Conference has been written by our Hub Developmental Assistant - Rob O'Connell. This was Rob's first opportunity to network with others working to improve support and services for those living with FASD across the UK and Ireland.

Salford FASD Conference - Part 1

FASD Ireland's Maggie McHugh reviews the Salford FASD Conference as someone living with FASD.

FASD Hub Ireland launches

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International FASD Awareness Day

“FASD 1oh!1 – Bringing it back to Br ain” - Jeff Noble in Ayr , Scotland

The wires got crossed in my brain as my mom couldn't stop drinking

Tristan Casson-Rennie

Cork 96fm Opinion Line - Interview with PJ Coogan