CASK Family Meet up 2024

Our annual family gathering on 28 September took place at the Thomley Activity Centre, bringing together eight families affected by CASK gene-related disorders. Sponsored by The Park, London, the event created space for both established connections and newly diagnosed families to meet and share experiences.

The meetup highlighted the profound value of in-person support for rare disease communities. One family demonstrated this commitment by travelling 300 miles to attend, underscoring how meaningful these gatherings are.

Online communities provide initial connection — but face-to-face interactions offer irreplaceable benefits. In-person interactions allow families to have meaningful conversations without the limitations of a screen, share stories and advice, and offer encouragement and solidarity in real time.

Thomley proved ideal — accessible facilities and sensory spaces designed for children with complex needs. This thoughtful venue selection enabled children to explore safely while parents engaged in candid discussions about their experiences.