First community fundraiser raises over £1000!

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.

Families gather for annual meet

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 all the children are unique they share many similarities and so being able to chat with others who appreciate the difficulties that this condition brings is invaluable. We can’t wait until next year!

World Autism Acceptance Week

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 do not end up with a diagnosis. When we give a diagnosis we use diagnostic criteria. Not everybody with traits will meet the diagnostic criteria and there may be many reasons for this. We also have to consider whether even if someone does have apparent traits whether autism is the best explanation for those traits, or whether they can be better explained by another condition/ diagnosis, for example a learning disability. A full assessment would aim to try and tease out an explanation for those traits.”

Can sleep disorders be a symptom of Autism?

“Many individuals with Autism can often have trouble sleeping. There are a number of possible reasons for this which may include difficulties with relaxing or winding down and/ or irregular melatonin levels.”

Five families meet for impromptu CASK gathering!

On Bank holiday Monday 2021 five CASK families gathered at Hobbledown Farm in Epsom. It was fantastic to actually manage a meet up, however small, after last year going without. For future meets, August Bank holiday Monday is the regular date. This year saw age ranges from just one year up to age 21. The children and their siblings enjoyed the animals, soft play and sensory area. We can’t wait for the next one!