The top half of two beautiful young girls smiling overlaid with pink, green and blue brush strokes

HELP us find treatments

FAMILIES

What is CASK?

CASK is a gene essential for healthy brain development. Mutations in this gene cause a range of disorders including MICPCH. Children with MICPCH can have a multitude of problems, including intractable epilepsy, inability to feed or drink, inability to walk, low tone, poor balance, global developmental delay, vision and/or hearing loss
Nine families in a line smiling at the camera

Check out our new page listing runs, swims and rides across the country. Our easy to use list provides entry dates, event dates and links to the websites. It's never been easier to do a sponsored event for CASK! Get…

Rare Disease Day 2024 The Portsmouth iconic landmark, the Spinnaker Tower, was lit up for Rare Disease Day by CASK Research UK. Our founder Laura had a busy day, spending the afternoon at the Palace of Westminster at the Rare…

Following the incredible success of an online fundraiser by one of our community members, the CASK Coalition's first CURE CASK project is complete! Baby Tenley turned 1 this January and her parents used the occasion to create a fundraiser to…

First CASK pilot grant awarded We've just awarded a £25,000 pilot grant to Professor James Hodge at Bristol University.  Since 2003, Professor Hodge has been dedicated to a CASK quest, and it's high time his dedication reaps rewards!In partnership with…

Sparkles for CASK This Christmas we invited families around the country to raise awareness of our rare disease. We currently have two trails running called 'Sparkles for Sarah' in honor of 6 year old Sarah who has MICPCH. Follow the Facebook…

At the beginning of September eight families with a child with a CASK disorder met at Camp Mohawk, near Reading. It was a hot and sunny day and the families made the most of the incredible grounds and cool indoor…

Get ready for a sparkling fundraiser this Christmas Organise your own living advent trail this Christmas.If you live in a friendly community and want to create a simple event to raise awareness of CASK whilst also bringing joy to every…

Are you interested in understanding the strengths and challenges of individuals with a CASK gene difference? Are you interested in exploring why your child might feel, act, learn, or communicate differently? So are researchers leading the BINGO project based at…

Our first ever grant is now open for submissions. Please read more here.

Rowlands Castle open gardens raised an impressive £5000 in its first year. Over 500 tickets were sold and 14 gardens opened to the public.

Check out our page for all the opportunities to help your child.

April 2024

Highlights from last year’s fun runs around the globe

OUR partners

we prioritise collaboration to accelerate the path to a treatment

OUR mission

CREATING THE BEST POSSIBLE OUTCOMES FOR PEOPLE WITH CASK GENE mutations

Challenge yourself with our annual spring fundraiser!