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Families gather for annual meet

Wednesday, 22 June 2022

Families gather for annual meet

Eight families from across the United Kingdom convened at Worcester Snoezelen in July. The event provided a valuable opportunity for children with CASK gene disorders and their siblings to enjoy sensory experiences and soft play activities.

Meanwhile, parents and caregivers engaged in substantive discussions about shared challenges. Conversations ranged from wheelchairs and feeding issues to transitioning into adult services and communication strategies. Despite each child's unique presentation, families found common ground in their experiences navigating this rare genetic condition.

Being able to chat with others who appreciate the difficulties that this condition brings is invaluable. We eagerly anticipate the next annual gathering.

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