Help for families
Information for families
Practical information, peer support and printable resources for families living with CASK-related disorders.
Informational events
Several times a year we hold webinars for the community. These range from international family meetings where families have the opportunity to ask experts questions, to learning about a new piece of technology that could benefit families.
Recordings & upcoming events →
Our annual UK family meet-up
Living with a rare genetic condition can sometimes feel isolating. Many families tell us that before discovering our community, they had never met another family facing the same challenges. That is why our annual UK family meet-up is such a special and important event.
Each year we bring together families from across the country for a relaxed, welcoming day where parents, children, siblings and carers can connect with others who truly understand their experiences. These gatherings create a safe and supportive space to share stories, ask questions, and exchange practical advice about day-to-day life.
Over time, many families develop lifelong friendships through these gatherings — a supportive network that families rely on throughout the year. By coming together we reduce isolation and build a strong community of shared understanding.
We always choose venues that are fully disability-friendly. In June 2026 we will be meeting at Camp Mohawk, near Reading — accessible outdoor play areas, sensory spaces and a welcoming environment.
Attendance is completely free, thanks to the generous support of our sponsor The Park. Open to families in the UK and Ireland.
Our families
Although our children all have a CASK mutation they are all unique and write their own stories. It can seem overwhelming following a diagnosis, with more questions than answers. Read stories from our UK community to find out how many are living a happy and fulfilling life.
Leaflets and printable resources
Whether you're looking to raise awareness, access printed information, or share helpful materials with family members, teachers, or clinicians, explore our resources to find a range of clear, informative support materials.
Awareness materials →
