Huntington’s Disease (HD) is one of the most cruel of the progressive degenerative neurological conditions. It does not  just affect individuals, it affects whole families. If the HD gene is present in a family member, advances in research have given people the opportunity to find out if they will succumb to the disease. For some, the consequences of this knowledge can be a heavy burden that can change a life forever. Research into a cure is on the cusp of a breakthrough which could alleviate that burden and make a massive difference to so many people affected by this cruel disease because they have the gene, are at risk of having the gene or have a loved one presenting with symptoms. The challenges faced by families are enormous.

Harley himself, is a young man who faces daily challenges due to autism, Tourette’s, OCD, anxiety and more. 

On 20th October he is taking on another challenge to raise money for the Huntington’s Disease Association (HDA) with a percentage of funds being allocated specifically to the Hampshire and IOW Branch to help the many families Harley and his own family have had the privilege to engage with for a number of years.

Harley additionally had his right foot amputated last summer due to a congenital birth defect and wears a prosthesis. He is still recovering and adapting. He will be “running” this event with the help of an innovative mobility aid called an Alinker. He will be supported by his Mum, Vanessa, and together they will take on the 10 mile challenge which is the Great South Run. 

Harley’s Mum is exploring the potential benefits of how an Alinker could help someone in the early stages of HD. It is possible that he may raise enough money to give someone in the early stages of HD, when mobility starts to become impaired, the opportunity to have freedom of mobility just that little bit longer by having access to their own Alinker. It has been a lifeline for him as he adapts to his own mobility issues and as a family we would like to give someone else the experience of this lifeline. At a time when hope can begin to be lost it could be something positive to keep someone moving, maintaining physical independence and boosting emotional well-being just a little bit more than might ordinarily be the case.

At the very least, it is hoped the money raised can contribute to the ongoing work of the HDA to support individuals and their families affected by HD  and assist in the ongoing research to develop a cure.

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