Jack's story

The 2017 Virgin Money London Marathon marked a very special moment in the life of Brain Research Trust supporter, Jack.

Having grown up with his father suffering from Huntington’s disease, Jack decided at the age of 18 years old to get tested to see if he had the genetic condition. There is a 50 percent chance of Huntington’s disease being passed down and Jack’s results confirmed that he had the gene and has the condition.

Jack May - Huntington's disease marathon runnerJack May - Huntington's disease

‘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.’

Jack, now 21, wants to give something back and make a difference for people diagnosed with Huntington’s disease in the future.

‘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 Trust. 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.’

Brain Research Trust funds research into neurological conditions including Dr Helen Crawford, whose PhD we funded at University College of London Institute of Neurology. To see the research she has carried out on the Huntington’s gene click here.