Family Voices Webinar Series

The Huntington's Disease UK and Ireland Alliance is hosting a series of lived experiences, 'Family Voices'. Family members from across the Huntington’s disease community will share their experience. Most webinars have been recorded and are available online.

Who are HDYO and What do  they do?   7-8 pm,  25 November 2025

The Huntington's Disease Youth Organization (HDYO) is an international organisation supporting, educating and empowering young people up to 35 years who are impacted by Huntington's disease. Their aim is to provide a safe place to support, educate and empower young people and their families.

  REGISTER HERE

The Huntington's Disease Alliance is delighted to welcome Jenna Heilman, Executive Director of HDYO, for this webinar where we will find out what HDYO is and what it does. We will discuss the international advocacy and educational work of HDYO that helps empower young people as they journey through being impacted by Huntington’s disease.

In this webinar Jenna will discuss:

• The impact of Huntington's disease on young people and the need to approach this community individually based on their circumstances
• HDYO educational program
• HDYO ambassadors
• Survey series and other research initiatives

Please join us to find out more about HDYO and what it is able to offer people living in families affected by Huntington's disease.

Previous Episodes

The HD Alliance UK and Ireland  met with families in Venezuela who are involved in the ground-breaking Painters of Hope art project on  14 February 2024.

The towns of St Luis, St Francisco and Barranquitas have the largest community of people with Huntington’s disease in the world and much of the knowledge that we have today about the genetic make up of the disease comes from them. We joined  a Painters of Hope session where we met families taking part and Marina Gonzalez, an architect and President of the Habitat Luz humanitarian organisation.

 

In conversation with Erin Paterson 

The Huntington's Disease Alliance met with  author Erin Paterson for a Family Voices webinar in June 2023. Erin published a book of stories from the Huntington's community called 'Huntington’s Disease Heroes' – Inspiring Stories of Resilience from the Huntington's Community.

A Canadian author and public speaker, Erin Paterson tested gene positive for Huntington’s disease. Shortly after she started suffering from depression, then received more crushing news, she was infertile. Despite those diagnoses she was determined to have a family and live a joyful life.

In conversation with Astri Arnesen 

Astri, who is from Norway, shares her own experiences of living in a family where there is Huntington's disease and discussing how she and her family coped with her being at risk. Astri also talks about her role with the European Huntington's Association and the Association's work advocating for Huntington's families and building bridges with the scientists researching potential Huntington's treatments.

In Conversation with Astri Arnesen 

We hosted a Huntington's at Christmas Family Voices on December 5th. Specialist occupational therapist Alex Fisher  shared some tips to help the festivities go a bit more smoothly and family carer and author Melanie Pearson (from the first Family Voices session) spoke about some of her own family Christmases and how she navigated bumps along the way.

PROOF-HD is a Phase 3 study in Huntington's disease and results are expected in 2023. The global study will be evaluating Pridopidine for the treatment of Huntington’s disease.

Dr. Michael Hayden, CEO of Prilenia, along with investigators Professor Anne Rosser and Dr Duncan McLauchlan provided an overview and insights into the progress of PROOF-HD. Dina De Sousa, HD advocate and family gave her perspective on HD research. A recording is available here: Proof-HD A Study Update 

Charles Sabine OBE, a former Emmy-winning news journalist for NBC, is from a family affected by HD. He has travelled the world advocating for Huntington's families and in 2017 co-organised an event where the Pope met a number of Huntington's families, documented by the film 'Dancing at the Vatican'.

        See: Charles Sabine | Family voices | Huntington's disease - YouTube

The third webinar features Siobhan whose husband has a 50% chance of developing Huntington’s disease. Together, Siobhan and her husband made the decision not to find out if he carries the faulty gene.     

    Siobhan Shares her PGD Journey

  "We don’t know, and we don’t want to know."

After much research, they decided to opt for pre-implantation diagnosis (PGD IVF). Siobhan shares her personal experience of finding out about Huntington’s disease and her PGD journey. 

For our second episode, we were joined by Sarah Winckless MBE and Sean a family member from Ireland.

 See: Sarah Winckless and Sean | Family voices | Huntington's disease - YouTube

Sarah Winckless MBE is a British rower and former star of Team GB. She has a bronze medal from the 2004 Athens Olympics and was twice world champion (2005, 2006). In 2005 Sarah came to Ireland to share her Olympic joy with us and she met Sean who has been a huge fan ever since!

Huntington’s disease is in Sarah’s family on her mother’s side. Sarah and her family supported her mum as she lived with the disease until she passed away in 2020. Sean and his family continue to support Sean's Dad. Sarah and Sean share their experiences of growing up in families impacted by HD. Sarah also shares her hope for the future and the inspiration she draws from the Huntington’s community.

For our first episode on May 16th, 2022 Melanie Pearson spoke about the impact of Huntington's disease on her family and about why it inspired her to write a book.  The recording is now available here: Family Voices In Conversation with Melanie Pearson

Mel says:

"For all the agony and distress it can cause, it’s amazing how Huntington’s can bring people together – people in the same situation, who understand. This is a short talk from the personal point of view of a survivor. My mum and brother both had the illness and I grew up at risk so it’s something that has deeply affected my life. I’ve written a memoir about my family and the impact HD has had on us all, and how we coped. I hope that sharing our experience might be helpful for other families."

The Huntington’s Disease Alliance was established to promote awareness of Huntington’s disease and improve support for families across the UK and Ireland. The Alliance consists of four independent charities, Huntington's Disease Association, Scottish Huntington's Association, Huntington's Disease Association Northern Ireland and Huntington's Disease Association of Ireland. The organisations within the Alliance share the common goal of helping people who live with Huntington’s disease to achieve the best quality of life possible. Collectively, the Huntington’s Disease Alliance also strives to universally increase understanding and raise awareness of the impact of the disease on individuals and families affected.