Category Archives: Uncategorized

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”

Lt Col. Hattersley running across England on Rare Disease Day On Rare Disease Day, February 28th, Lieutenant Colonel Gareth Hattersley will be running 120km from Fulwood Barracks, Preston to Gaza Barracks, Catterick Garrison.  Gareth will be attempting to run the 120km route, supported by twelve other members of his Regiment, within 24 hours. The runContinue reading “120km for CASK on Rare Disease Day”

The first of many Bingo nights for CASK Research Foundation was held this October. With a sell-out audience and fantastic prizes, the night made over £1500! Founder Laura gave an emotive speech explaining the difficulties of living with a CASK gene mutation. All profits will go towards a scientific research grant.

Charity founded by Rowlands Castle mum in £1.2m fundraising drive to find possible cure for brain disease A NEW brain disease charity founded by a Rowlands Castle mum has launched a fundraising campaign in a ‘once-in-a-lifetime’ opportunity to find a possible cure.

In July eight families from all over the UK met up at Worcester Snoezelen. It was a wonderful day with the children and their siblings enjoying the sensory rooms and soft play whilst the adults could chat. Conversations ranged from wheelchairs and feeding issues to transitioning into adult services and communication devices. Even though allContinue reading “Families gather for annual meet”

March 28th – April 3rd In aid of World Autism Acceptance Week we asked our medical advisor, Dr Laura Powling, some questions that had been on the minds of parents of CASK children: Can you have traits without having a diagnosis of autism? “Absolutely. Many children, young people and adults present with traits, but doContinue reading “World Autism Acceptance Week”