Lucy and Tom are doing a sponsored 10k walk starting at Rother Valley Country Park and finishing at Poolsbrook Country Park on Sunday 25th August 2024.

They are raising money for Alex TLC - a charity set up to support everyone living with leukodystrophy. Leukodystrophies are rare conditions that many people have never heard of. We certainly never had, until one day we found out that the rare Adrenoleukodystrophy (ALD) gene runs through multiple members of our family. Like most people, we’d never considered what conditions might be in our genes, and how they might affect us and our lives.

When we needed help and support with understanding what this meant for our family we discovered the charity Alex TLC and the incredible work they do. They provide essential support and information to those affected and help raise awareness more broadly. Each year, they hold a community weekend bringing together the international medical and research community and the patients and families they are trying to help.

This community event is so important for those struggling with the effects of leukodystrophy and the isolation it often brings. If Lucy and Tom can raise their £250 target, it would support more families to attend, helping them to make connections with other families and medical professionals.

Please sponsor Lucy and Tom and help us spur them on to raise funds for this amazing charity!

Thank you

What are Leukodystrophies?

Leukodystrophies are rare genetic disorders that mainly affect the white matter of the central nervous system (ie the brain or spinal cord). They affect people of all ages and backgrounds, most notably children.

Leukodystrophies are usually degenerative, causing symptoms such as impaired mobility, vision, speech and hearing, incontinence, and loss of cognitive skills. In many cases, this sadly means a reduced or limited lifespan.

You can find out more about Alex TLC and learn about leukodystrophies here - https://alextlc.org/