CASK Research

Joanne and Alice steal hearts at the London marathon!

Wednesday, 20 May 2026

Joanne and Alice steal hearts at the London marathon!

Our ambassadors, Joanne and Alice, completed the London Marathon for a second time, raising over £4,000 for CASK Research. Alice lives with MICPCH, a condition resulting from a CASK gene mutation, and uses a wheelchair full-time. Joanne, an accomplished runner, regularly pushes Alice during races across the country.

Joanne explained their fundraising choice: "Usually we fundraise for charities that have helped Alice in the past but now there is a specific charity dedicated to trying to find a cure" for her condition. She emphasised the importance of halting or slowing skill loss, noting that Alice is one of the oldest individuals with her particular condition — making research efforts time-sensitive.

The marathon's most emotional moment came near the finish line when Alice left her wheelchair and walked across it with assistance. Observers were moved to tears.

Video footage of Alice crossing the finish line is on our Facebook, Instagram, and TikTok.

Originally published on caskresearch.org.