Pushing for a cure: Joanne and Alice’s Ramathon Journey

This year, Joanne is taking on the Ramathon alongside her 25-year-old daughter, Alice – pushing her in a running wheelchair to raise vital funds for CASK Research, a charity dedicated to finding a treatment for Alice’s rare and life-limiting condition.

Alice has a CASK gene mutation, an extremely rare condition with no current treatment or cure. It causes epilepsy and severe visual impairment, and she is unable to eat or drink, relying on a feeding tube for more than 20 hours a day. She cannot walk or talk, and because the condition is progressive, the family face constant uncertainty about what abilities she may lose next.

Running began as a way for Joanne to stay fit and support Alice’s care, but it quickly became something more. “I needed to stay fit to lift Alice and give her the life she deserves,” Joanne explains, “but I also wanted something we could do together that fit around full-time work.”

In a world where opportunities for adults with complex needs can be limited, running has given Alice something truly special – a sense of belonging. Through race days and training, she is part of a community that sees her, supports her, and cheers her on every step of the way.

This year, Joanne and Alice are once again running for CASK Research, a charity working to bring answers and hope to families like theirs. While they know there may not yet be a cure, they hope that ongoing research could one day slow or halt the progression of the condition.

Alice is one of the oldest girls living with CASK, and her resilience continues to inspire everyone around her. As Joanne says, “I’ll never truly understand what it’s like to slowly lose the ability to walk, to sit upright, or even enjoy something as simple as chocolate – but Alice does, and she faces it with incredible strength every single day.”

This year marks their fifth Ramathon together.

To support Joanne and Alice, click here: Joanne Lee is fundraising for CASK Research Foundation