Huntington's Disease Association of Ireland

17/06/2026

Please share widely to show appreciation for the remarkable Nancy Wexler, Huntington's Disease Foundation and to highlight her extraordinary achievements

Her decades of work on Huntington’s disease helped lead to the creation of a genetic test for the devastating condition. Why didn’t she take it herself?

16/06/2026

Can you nominate Huntington's Disease Association of Ireland for the AIB Community Fund?

Your support will give us a chance to receive €20,000 to support our services for families impacted by

Nominations close by June 19th so there is still time to choose us ! 🙏

Please go to this link: https://aib.ie/personal-forms/community-fund

Nominate: Huntington's Disease Association of Ireland
Registered Charity Number : 20025656
Location: Greater Dublin
Social theme: Other

Please share with your followers.

Great to connect with Paddy Byrne, Blackrock, Life Pharmacy Ireland and the AIB Grafton Street team at their info launch last week.

14/06/2026

Huge thanks to everyone who contributed to an informative and uplifting Research day at Trinity College Dublin on June 12th.

Family members participation and engagement is crucial to ensure successful research outcomes.

Thank you to Eva Woods, Dr Róisín Mc Mackin, and Eoin O'Conor at the McMackin Lab, TCD and Professor Niall Pender Royal College of Surgeons in Ireland for organising the event.

Triona O'Hanlon, HDAI Chairperson shared her family experience - the gut-wrenching anxiety of waiting on her mother's predictive test result before her wedding and the relief of a favourable result. Triona's mother provided care to her own mother, her aunts and later her brothers accross six decades. Triona highlighted the urgent need for a HD carepathway to ensure equitable access to services and clinical trials for HD familes

Professor Anne Rosser shared details of the ongoing AMT-130 trial which shows a 75% slowing of the disease. She thanked the brave people who participate in this trial and discussed the 10 year investment at Cardiff University neurotherapeutics centre which allows herself and Professor William Gray to work on ground breaking research.

Professor Robert Lahue, formerly University of Galway discussed progress in therapeutic strategies to inhibit somatic CAG expansions in HD

Ruth Fullam highlighted the fundemental role of in advancing therapies. Over 22,000 participants have contributed globally and registration is ongoing.

Updates on research studies here included:
Prof. Niall Pender (Enroll-HD study lead in Ireland) and Megan Oglesby University of Galway who are investigating the impact of Growing up in a HD Family.
Professor Pender reminded us that despite meagre funding for HD research in Ireland his collaborator list is increasing (see photo)

Katie Irwin Crosby Snr Speech and language therapist spoke about dysphagia interventions.

Síle Carney University of Galway discussed her work with Ciara Egan to study social and verbal abilities in premanifest HD

Dr Róisín Mc Mackin acknowledged the incredible work rate of Eva Woods who advocate, raises awareness, writes for HDBuzz and sources research grant funding while completing her doctorate studying early changes in brain signaling.
Eva took time earlier in June to participate in the Vhi Women's Mini Marathon to raise funds for Huntington's Disease Association of Ireland!

12/06/2026

Derek Readman who consistently shares his expertise and energy to improve care, awareness and support for the community in Ireland has recently joined the European Huntington Association board!

Neurological Alliance of Ireland (NAI)
European Federation of Neurological Associations

Please welcome Derek to the EHA Board! 🎉

Derek is a board member of the Huntington's Disease Association of Ireland and a gene-negative family member. With experience on the EFNA Community Advisory Board, he brings a deep commitment to making patient voices heard at the European level.

In his own words:
"I’m thrilled to join the board of the European Huntington’s Association (EHA), bringing my passion for advocacy to support people affected by Huntington’s disease across Europe.
I've seen firsthand the profound impact of HD on families, which drives my commitment to improving care, awareness, and community support. I look forward to fostering stronger connections between national groups like ours in Ireland and the wider HD and neurological communities."

We are glad to have you with us, Derek. Welcome aboard!

31/05/2026

A big shout out to the wonderful women participating in the Vhi Women's Mini Marathon today raising funds and awareness for
Huntington's Disease Association of Ireland (HDAI) | Online Fundraising https://share.google/zEjW1fNTWBa3hdtVL

IT’S RACE DAY. 💜🏃‍♀️🎉

The wait is over. The streets are ready. The crowds are ready. And now it’s your turn. 🙌

Today is about so much more than 10K. It’s about the atmosphere, the support, the laughter, the emotion at the finish line, and the feeling of doing something incredible together.

Whether you’re running, jogging, walking, fundraising, supporting friends, or soaking up every second of the day, enjoy it all. This is what the Vhi Women’s Mini Marathon is all about. 💜

LET’S GO!!! 🔥

17/05/2026

Wonderful to have such an engaging Annual Members Meeting and respite weekend at the Shearwater Hotel & Spa Ballinasloe.

Huge thanks to our guest speakers Prof. Nial Pender, Royal College of Surgeons in Ireland and PI for Enroll-HD in Ireland, and Catherine Martin Scottish Huntington's Association for their postitive and passionate talks. Early intervention, coordinated care and opportunity to participate in clinical trials are essential for good care.

Deputy Dr Martin Daly, Fianna Fáil health spokesperson kindly provided a video address stating his support for MDT services to treat the many aspects of HD.

HDAI Chairperson Triona O'Hanlon thanked volunteers in our community and spoke of how we can all `'Help Ourselves' by sharing stories to advocate for improved care

Delighted to meet up with regular and new family members who make this a special event.

14/05/2026

14/05/2026

📢 Still a few days left to enter the competition - apply by Monday, 18th May
Calling all Advocates!

Enter EFNA's BrainTalks for your opportunity to speak at the EFNA Conference 2026, 'Neurology & Society', taking place 25–26 September in Dublin, Ireland. Winners will receive flights, accomodation and access to both days of the conference.
Learn more here: https://www.efna.net/braintalks2026/

14/05/2026

We are really looking forward to meeting everyone at our annual Members Meeting on Saturday with guest speakers Professor Niall Pender, Royal College of Surgeons in Ireland and Catherine Martin Scottish Huntington's Association

There are still a few seats available if you want to join us on the day - reserve today at [email protected]

13/05/2026

As May is month we want to give a shout out to some of our wonderful volunteers who are raising awareness and funds for Huntington's disease.

Danielle is walking a massive 200km during the month of May in memory of her mother and sister.

I’m walking 200km in memory of Charlotte and Nicola for Huntington's Disease Association of Ireland (HDAI), created by Danielle Ryan | iDonate.ie