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HELP us find a cure

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

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.

Meet Professor Kerstin Kutsche, who first described MICPCH in 2008. The webinar starts with a basic genetics tutorial and then goes on to answer questions from the CASK community. We recommend every parent of a child with MICPCH watches this…

Light up your social media for Rare Disease Day and show you CARE ABOUT RARE Download Download Download Use one of our three profile pictures above or:Personalise your Facebook profile picture and add a Rare Disease Day frameAdd a fun…

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!