Personal experiences of Huntington's disease and the impact that the Huntington's Disease Association has had on their lives.
If you missed our Huntington's Community Conference, you can now watch our three powerful personal stories told by three of our brave ambassadors. Each ambassador has a very different story and each shares an glimse into their life with Huntington's disease. They tell us how the Huntington's Disease Association has been there for them in various ways throughout their journey.
Hannah's story
Hannah reflects on how the Huntington’s Disease Association and the Youth Engagement Service has supported her family throughout their journey. She shares the lessons she’s learned, the support systems that have made a difference, and practical guidance for other carers and parents. Hannah’s journey with Huntington’s disease began in 2017 when her husband was diagnosed. As a carer and mother to two children who are at risk of inheriting the condition, Hannah has been forced to face the realities of Huntington’s which have led to her becoming a Huntington’s Ambassador. Hannah bravely shares her story of how she has navigated her husband’s Huntington’s disease. From diagnosis to speaking with their children, to caring, to professional interventions. In recognition of her experience, Hannah was featured on BBC News as part of an exhibition highlighting the lives of carers.
Lisa's story
Lisa shares her story, from the shock of finding out about Huntington’s disease to caring for her daughter for 13 years and managing her end-of-life care. She talks about how the Merseyside branch of the Huntington's Disease Association became her family during this time. Lisa’s daughter, Becky, was diagnosed with Juvenile Huntington’s disease when she was 20 years old and six months pregnant. Becky passed away in 2021 around the same time as her two half-sisters who were all born to the same father. Lisa and her daughter were unaware that he carried the Huntington’s gene. An inspiration to many, Lisa now raises Becky’s son, who is now at risk of Huntington’s disease. Lisa does what she can to raise awareness of Huntington’s and recently abseiled down Liverpool Cathedral.
Jenny's story
Jenny shares her Huntington’s story, the emotional highs and lows and the trial and error of navigating symptoms and medications. She shares the strategies that have helped her live a more fulfilling life. Jenny speaks openly about what she calls the "Huntington’s mask", the two sides of her personality. The Jenny she knows, and the part of her shaped by the disease. She will also discuss how mental health support, particularly Acceptance and Commitment Therapy (ACT), has played a vital role in her wellbeing. Jenny was diagnosed with Huntington’s disease in 2023. Inspired by a moving talk from fellow ambassador Chris at last year’s AGM, she became a Huntington’s Ambassador in 2024. Since then, she has shared her story to raise awareness of Huntington’s and the wide range of support she gets from the charity.
Thank you so much to our ambassadors for sharing a glimpse into their personal lives with us.
Our next annual Huntington's Disease Community Conference will take place on Saturday 7 and Sunday 8 November 2026.
Sharing your experience
Whether you are living with Huntington’s disease, caring for someone affected, fundraising or volunteering for us, have used our services or attended one of our events, your experience matters.
By sharing your experiences, you can help ensure that other people in our community feel less alone. Lived experiences help the public as well as policy and decision makers see what life is like for people affected by Huntington's disease and the impact of the support we offer.
To share your experience with us you will need to fill out the form below. Please ensure you have permission from everyone in your story, or, please keep them anonymous. All pictures used to support your story need to have signed photo consent (a form will be sent to you after filling out the form).