CASK Family Meet Up 2024 On Saturday, 28th September, eight families gathered at the Thomley Activity Centre for the annual CASK Family Meet-Up, an event that has become a cornerstone of connection, support, and understanding for those living with CASK gene-related disorders. Organized by CASK Research UK and generously sponsored by The Park, London, thisContinue reading “CASK Family Meet up 2024”
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Chase a cure at the Great South Run!
Great South Run – Juniors! Join us for the Junior and Mini Great South Run this October! It’s your chance to dress as your favourite superhero and raise money to find a treatment for CASK! The theme for the children’s Great South Run is Superheroes. Sign up to one of Britain’s most famous races and joinContinue reading “Chase a cure at the Great South Run!”
CASK Awareness Week 2024
Visit our dedicated page for all your CASK Awareness material. From ideas on things to do all week to flyers to download. It’s all there on our webpage.
Challenge yourself this year for CASK
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 inspired now at https://caskresearch.org/race-for-cask-research/
Rare Disease Day 2024
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 Disease Day reception and then launching the online premier of the new documentary ‘Life withContinue reading “Rare Disease Day 2024”
X Reactivation Study funding complete!
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 pilot grant awarded
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
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”
UK CASK meet up 2023!
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!”
The CASK living advent trail
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”
