Twelve families gather for the annual CASK family meet-up at Camp Mohawk

On Saturday, we were delighted to welcome 12 families to Camp Mohawk in Reading for our annual CASK family meet-up. With the sun shining throughout the day, it was the perfect setting for families to relax, connect, and share experiences.

The gathering brought together both families attending for the first time and those who have joined us at previous events. Over six wonderful hours there were smiles, laughter, splashing in the pool, and countless conversations as families exchanged advice, support, and stories about their remarkable CASK warriors.

One of the most special aspects of the day was seeing children and adults with CASK disorders spending time together.

Families reflected on the similarities they recognised in one another's children and many parents spoke about the immense relief they felt when meeting other families living with the same condition for the first time. Others shared how reassuring it was to meet older individuals with CASK disorders, offering a glimpse of what the future may hold for their own child. For many, this helped ease some of the uncertainty and anxiety that can come with raising a child with a rare condition.

Looking ahead, researchers from Bristol who are establishing a Centre of Excellence for CASK Disorders are keen to join us next year, making the event even bigger and more impactful. To make this possible, we are seeking supporters who may be able to help with event organisation or provide financial support.

We firmly believe that families should never have to pay to attend these vital opportunities for connection and support. We would also like to offer assistance with travel and accommodation costs wherever possible.

If you would like to help make next year's event a reality, please contact [email protected].