Thanks so much for visiting my fundraising page. I’m running the Brighton Marathon for CureUsher, a charity dedicated to funding research for a cure for Usher Syndrome.

The below story is not mine, it is my best friend Kim and her husband Blake’s story, and, more importantly, this story belongs to their two gorgeous children: Cole (7) and Sadie (4), who both have Ushers Syndrome Type 1D. This is characterised by profound deafness at birth, limited balance function and progressive vision loss through retinitis pigmentosa (RP).

Cole and Sadie were born profoundly deaf, and both had cochlear implants fitted at a young age to give them access to sound. In 2021, further genetic testing took place and Cole and Sadie were diagnosed with Ushers Syndrome. This means that, in addition to their profound hearing loss, they will likely begin to lose their vision in their first decade of life. Every second counts when it comes to researching a cure, and any donations to help will be greatly appreciated.

CUREUsher raises funds for research into a cure for Usher syndrome and raises awareness of the condition affecting Cole and Sadie and over 400,000 people worldwide.

CUREUsher is a registered charity in England and Wales, number 1181293