The Huntington's Disease Alliance is hosting a new series of lived experiences, 'Family Voices'. Family members from across the Huntington’s disease community will share their experience.
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.
For our next episode on September 7th, we will be talking to Siobhan. Siobhan's husband has a 50% chance of developing Huntington’s disease and together, Siobhan and her husband made the decision not to find out if he carries the faulty gene.
"We don’t know, and we don’t want to know."
After much research, they decided to opt for pre-implantation diagnosis (PGD IVF). In this talk, Siobhan will share her personal experience of finding out about Huntington’s disease and her PGD journey.
The Huntington's Disease Alliance brings together Huntington's disease charities from the UK and Ireland.
For our second episode, we were joined by Sarah Winckless MBE and Sean a family member from Ireland.
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 shares her hope for the future and the inspiration she draws from the Huntington’s community.
This recording will be available soon
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
"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."