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 help raise funds towards CURE CASK. They raised an impressive $35,000, which was more thanContinue reading “X Reactivation Study funding complete!”
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 Dr. Ben Housden from Exeter University, they’re creating something spectacular – a robust fly modelContinue reading “First pilot grant awarded”
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 pages for the Rowlands Castle and the Comberbach trails. A Living Advent Trail isContinue reading “Sparkles For CASK”
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 spaces. Everyone loved meeting the newest addition to the the ‘club’, who, at nine monthsContinue reading “UK CASK meet up 2023!”
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 level of ability, then look no further! A Living Advent Trail is when aContinue reading “The CASK living advent trail”
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 the MRC Cognition and Brain Sciences Unit, University of Cambridge. BINGO stands for Brain andContinue reading “New Cambridge University Study”
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 unique and eye-opening webinar. It gives vital information on the care of our children andContinue reading “Professor Kerstin Kutsche Webinar”
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 frame Add a fun filter to your Facebook or Instagram photos Look up statistics and infographics onContinue reading “Rare Disease Day media”