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Jack’s story

Jack May ran the 2017 Virgin Money London Marathon to raise funds to support research into Huntington's disease

Having grown up with his father suffering from Huntington’s disease, Jack decided at the age of 18 to get tested to see if he had the Huntington's gene. He knew there was a 50 per cent chance that he had the gene, in which case he himself would go on to develop Huntington's.

A devastating diagnosis

Having grown up with a father suffering from Huntington’s disease, I know too well what it means. Huntington’s impacts everything that makes us human – emotions, thinking ability, and mobility. As parts of the brain degenerate, people suffer from severe loss of memory, judgment and capacity to multi-task. When it was confirmed I had the gene, I was miserable for months after and fearing that if I were to have children, I may pass the gene on to them.

A positive outlook

Several years later, at the age of 21, Jack decided that he wanted to do something positive and make a difference for people diagnosed with Huntington's disease in the future. He decided to run the 2017 London Marathon to raise funds for Huntington's research.

It took some time and support from my family to adjust my outlook on life and decide to start a new chapter. Yes, I know this disease is going to throw a lot of challenges at me, but I need to start living for right now. This is why I ran the London Marathon this year for Brain Research UK. They fund pioneering research to try and help change the future for people like me. I am inspired by their research and hope that one day, we may be able to slow down or even stop this terrible disease. This is why I was so determined to help fundraise and run the marathon.’

Hope for the future

Funds raised by Jack and his family have supported research at Cardiff University, led by Professor Lesley Jones and Dr Thomas Massey. This research has looked for changes in other genes in people with Huntington's, specifically changes that influence the age at which Huntington's develops. The team has found two major new types of genetic variation that show a large influence on age of onset. Their data is a starting point for new experiments to explore the mechanisms by which this genetic variation affects age of onset, and to inform the development of specific therapies. 

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