Meet Jess, Ricky and Dane - three siblings who have recently experienced a loss after their mother, Janice, passed away on 20th June 2022 following a familial Frontotemporal Dementia (FTD) diagnosis. In Janice's case, the FTD was caused by a genetic disorder that causes progressive damage to the brain. Unfortunately, there is a 50/50 chance that all three siblings have inherited the genetic mutation, meaning they will also develop this debilitating disease in the future.

In February 2021, Jess made the decision to get tested for the genetic mutation, and unfortunately, her results came back positive. This news was followed by Ricky's positive test results in 2022. Dane, on the other hand, has chosen not to be tested for his own personal reasons.

Despite the challenges that lie ahead, Jess and Ricky are determined to take action and raise awareness about FTD. Each year, they visit the UCL Dementia Research Centre and take part in the GENFI Study. Researchers from UCL use techniques to study Jess & Ricky including MRI scans, memory assessments, cognitive and optical tests, lumbar punctures and more. By doing this, researchers hope to identify biomarkers and improve the diagnosis and treatment of this condition.

In addition, on 13th May 2023, Jess & Ricky are participating in the 25km Jurassic Coast Ultra Challenge to raise funds for the National Brain Appeal. This is a UK-based charity who directly fund the GENFI study which is so important for the future of Jess, Ricky and many others. They are committed to improving the lives of people with FTD and to advancing the field of neurology and neuroscience through research, education and innovation.

The 25km walk consists of a very challenging route including coastline, rocky terrain and an elevation of 570m. Both Jess & Ricky are new to hiking and haven't done anything like this before, but they are determined to complete the challenge to support such an important cause!

Please help them by donating what you can! 25p or £25 will make such a difference. Thank you for reading their story!