Huntington's Disease Association of Ireland

10/10/2026

A poignant article from Saija Ristolainen-Kotimäki of European Huntington Association on highlighting the family impact of

This is my first LinkedIn article, and today feels like the right day to share it. In Finland, Mental Health Carers’ Day ( ) is observed on 9 October, followed by World Mental Health Day ( ) on 10 October. In the article, I reflect on how Huntington’s dis...

10/10/2026

Disease progression in Huntington’s disease (HD) is currently monitored primarily through tests scored by clinicians, neuroimaging, and measurements made in blood or spinal fluid.

But wouldn’t it be great to have an easy, noninvasive way to track disease symptoms? Recent studies suggest that this may be possible!

HD researchers developed an automated device that can estimate how HD is progressing by analyzing a person's speech while they perform a simple counting task.

Read all about it here → https://en.hdbuzz.net/584-your-voice-matters-using-speech-to-monitor-huntingtons-disease/

04/10/2026

Sinéad Ní Lorgnáin Richard, Eimear, Leah & James participated in the Galway Bay Half Marathon and raised over €5,000 for .
What a fabulous contribution!

29/09/2026

Thank you Derek Readman and European Huntington Association for your work to challenge stigma, build understanding and drive change for

26/09/2026

The Huntington Disease Care Pathway, approved by the HSE in Auqust 2026, is now available to view on the HSE website:
https://about.hse.ie/hcp-publications/hcp-integrated-care-pathway-for-huntingtons-disease

The Care Pathway outlines the range of varied symptoms that can occur and details the multi-disciplinary services required to support a person living with HD to manage their condition.

Thank you to families impacted by who have shared their experience, to the National Clinical Programme for Neurology and to HD workshop participants who have contributed to this Care Pathway

If you are living with HD please share the Care Pathway with your health care team.

See HSE Publications or follow link at huntingtons.ie

16/09/2026

A new research study explores whether nutrition should be monitored earlier ir

This HDBuzz article written by Eva Woods outlines the importance of early and regular monitoring.

It is important to speak with health care professionals if you have concerns.

"Families can ask about regular weight checks dietitian support, swallowing reviews, high-energy meals, nutritional supplements, and safe eating plans."

What if nutrition is one of the warning lights we should be checking earlier in Huntington’s disease? New research suggests simple nutrition measures may help identify when people with HD need extra support. Writer: Eva Woods Editor: Leora Fox https://lnkd.in/gpHr4FGZ

05/09/2026

Derek is a tireless advocate, raising awareness at national and international level, on behalf of families impacted by Huntington's Disease and other neurological and rare diseases.

We are proud that he is also a Board Member of Huntingtons Disease Association of Ireland and of European Huntington Association

We are grateful for the work of the Neurological Alliance of Ireland (NAI) in promoting lived experience participation in research, awareness and health service planning initiatives.

05/09/2026

On International Charity Day HDAI are delighted to announce that we have been chosen by Mitie Ireland as a charity partner for their Annual Charity & Awards Night

This is of huge support to families affected by Huntington's Disease, a challenging neurodegenerative disease that impacts families across generations.

Families require specialist information and practical support to cope with the complex symptons and hereditary aspect of this disease. HDAI works to support families also increase understanding and awareness of . For info see https:www.huntingtons.ie

A sincere Thank You on behalf of the HD Community!

03/09/2026

If you are from a family impacted by in Ireland you can share your experience to help improve accessibility and inclusion in HD studies here.

Please see further info here: https://forms.office.com/e/dhiHFfeXvb

📣We want to hear from you! 📣 BRIDGE-HD-IE is a survey exploring experiences of Huntington’s disease research in Ireland and the barriers that may affect participation! The survey is completely anonymous and your feedback will help shape more inclusive, accessible and participant-focused rese...