Running for Alice: A Half Marathon for a Cure

This year, Joanne is running the Ramathon Half Marathon while pushing her 24-year-old daughter Alice in her Delichon Delta running wheelchair - all to raise money for Cure CASK, a charity dedicated to finding treatment for her rare and life-limiting condition.

Alice has a CASK gene mutation, a condition so rare that there is currently no treatment or cure. It causes her to have epilepsy, severe visual impairment, and she can't eat or drink, so is fed through a tube in her stomach for over 20 hours a day. She can't walk or talk, and the condition is progressive - they don't know what she might lose next.

Alice is the reason that Joanne started running. She needed to stay fit to lift her and give her the life she deserves, but also wanted something that they could do together that fits around full-time work.  Joanne said,

"I never imagined how much she would love it - or how incredibly welcoming the running world would be."

In a world where inclusion for adults with complex needs is pretty rubbish, running has given Alice a place where she belongs. She's part of a community that sees her, welcomes her and cheers her on every step of the way.

Usually, Joanne would raise funds for charities that have supported Alice, but this year is different. Cure CASK is now working to find answers specifically for others like her. They know there's no fix for Alice but halting or slowing the loss of skills could make all the difference.

Joanne says she'll never understand what it's like to slowly lose the ability to walk, to sit upright, or even enjoy chocolate - which she loved - but Alice knows, and she lives it every day. She is one of the oldest girls with this condition, and the strength keeps her going.

Joanne and Alice have lots of races coming up this year, starting with Ramathon. She'll be pushing Alice every mile of the way - for her, and for a future where others like he don't have to face this alone.