CASK Family Meet Up 2024
On Saturday, 28th September, eight families gathered at the Thomley Activity Centre for the annual CASK Family Meet-Up, an event that has become a cornerstone of connection, support, and understanding for those living with CASK gene-related disorders. Organized by CASK Research UK and generously sponsored by The Park, London, this year’s event saw a wonderful blend of long-standing friendships and new introductions.
Some of the families at the event have been meeting for years, forming strong bonds through shared experiences. These long-standing relationships have been built over time through previous meet-ups and social media, but there’s something particularly special about reconnecting in person. Meanwhile, other families were attending their very first meet-up, having only recently received a CASK diagnosis for their children. For them, this gathering was not only a chance to learn from those who had walked the path before them but also an opportunity to find much-needed support and reassurance from others who truly understand.
One family even travelled 300 miles to attend, highlighting just how valuable these in-person meet-ups are for families navigating the challenges of rare diseases.
The power of peer support
For families affected by CASK-related disorders the journey can be isolating and overwhelming. Peer support is a lifeline in the rare disease community, offering more than just shared stories. It provides a sense of belonging, validation, and hope. Meeting others who understand your struggles can significantly improve mental health, offering comfort that can’t always be found through professionals who may not be familiar with the intricacies of the condition.
While online communities and social media can provide a great initial connection, nothing compares to the depth of support and empathy that can come from meeting face-to-face. 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. There is a level of human connection that only physical presence can provide—whether it’s a knowing smile, a shared laugh, or the gentle reassurance of simply being together.
The Thomley Activity Centre, with its accessible facilities and sensory spaces, was the perfect venue for children and their families to relax and enjoy the day. Our children, many of whom live with complex needs, could explore, play, and engage in a safe environment designed with them in mind. Meanwhile, parents had the opportunity to speak openly about their challenges and triumphs.
