Clare's story

My dad was diagnosed with Huntington’s just after my 25th birthday. He struggled with the disease for a further 14 years and died just after my 39th birthday. During those 14 years we watched our dad go from being the life and soul of any party to being bed ridden, needing to be fed blended food, incontinent...

I have had support from my Specialist HD Adviser over the last 14 years, she has been fantastic. She has always been there for me and has given me advice and support. She has also given me difficult and hard advice over the years. I cannot thank her enough.

I live at risk of Huntington’s and have a 50/50 chance of inheriting the disease. It has taken me over 10 years to decide that I do not want the test. I now live in hope that there may be a cure that I may not have HD.

How your money is spent

Learn about the breakdown of your donation and what it goes towards:


£5 could help support our youth service provision.


£10 could pay for information guides for people living with Huntington's disease.


£25 could pay for 15 calls to our confidential telephone helpline service.

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