20 May 2026
Joanne and Alice steal hearts at the London marathon!
Ambassadors Joanne and Alice completed the London Marathon for a second time, raising over £4,000 — and Alice walked across the finish line.
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News & Updates
Stay up to date with the latest news, research breakthroughs, fundraising events, and stories from the CASK Research community.
4 February 2026
Get ready for Rare Disease Day 2026!
Rare Disease Day on 28 February is THE day to raise awareness of CASK disorders and all rare diseases. Tell three people.
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4 February 2026
The £50 Challenge
Form a team, receive £50 seed funding, and generate as much money as possible in two months. No rules. No limits. No excuses.
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10 November 2025
Read our new study on CASK!
Partnered with the University of Cambridge: new findings on the neurodevelopmental spectrum of CASK-related disorders.
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10 November 2025
Craig runs 76km for CASK!
Craig Hattersley completed a 76km ultramarathon from Aldershot to Portsmouth on 8 November, supporting CASK Research while caring for his daughter Sarah.
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9 September 2025
Pauline's WingWalk for CASK!
Grandmother Pauline Offen strapped to a biplane wing on 5 October to fundraise — motivated by her granddaughter Jess.
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24 April 2025
Rowlands Castle Open Gardens
Community event featuring private gardens in a South Downs village. Four new gardens on show this year.
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17 March 2025
CASK Research joins forces with Bristol University
£40,000 gift to The University of Bristol — clinical patient database + drug-screening models + GW4 collaboration.
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30 January 2025
Rare Disease Day 2025
Campaign theme: Get Ready, Stay Hopeful. Two gene therapies in development; register with RARE-X.
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13 January 2025
ACQUIRE therapy and CASK
Study of 20 girls with CASK mutations receiving intensive ACQUIRE Therapy — improvements in communication, motor and cognitive pairing.
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11 December 2024
Latest news on our gene therapy
Update from the CURE CASK project: iPSC models, CRISPR/dCas9 epigenetic rescue, and Phase 2 mouse-model work.
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2 October 2024
CASK Family Meet up 2024
Eight families gathered at Thomley Activity Centre on 28 September, sponsored by The Park.
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27 June 2024
CASK Awareness Week 2024
CASK Awareness Week 2024 is here — visit our dedicated page for materials, activity ideas and downloadable flyers.
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3 April 2024
Challenge yourself this year for CASK
New dedicated page listing runs, swims and rides across the country for sponsored fundraising.
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4 March 2024
Rare Disease Day 2024
Portsmouth Spinnaker Tower lit up for Rare Disease Day; documentary premiere and parliamentary reception attended.
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18 January 2024
X Reactivation Study funding complete!
First CURE CASK project fully funded — thanks to Baby Tenley's birthday fundraiser which raised $35,000.
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4 December 2023
First pilot grant awarded
£25,000 pilot grant awarded to Professor James Hodge at Bristol University to develop a fruit-fly model for CASK research.
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4 December 2023
Sparkles For CASK
Two Living Advent Trails active — Rowlands Castle + Comberbach. Decorated windows unveiled daily through December.
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18 September 2023
UK CASK meet up 2023!
Eight families gathered at Camp Mohawk for peer support — soft play, outdoor activities, warm weather.
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8 September 2023
The CASK living advent trail
Festive fundraising initiative: a community decorates 24 windows for advent, each unveiled daily before Christmas.
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9 August 2023
New Cambridge University Study
BINGO project at Cambridge — seeking 10–20 participants to study CASK gene differences and behaviour.
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14 July 2023
CASK Research pilot grant
Our first ever grant is now open for submissions — a £25,000 pilot grant for CASK research.
Read more →14 July 2023
Open Gardens raises £5000!
Inaugural Rowlands Castle Open Gardens — over 500 tickets sold, 14 gardens, £5,000 raised.
Read more →9 May 2023
Professor Kerstin Kutsche Webinar
Webinar with Professor Kutsche — the researcher who first identified MICPCH in 2008. Genetics tutorial + community Q&A.
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11 February 2023
Rare Disease Day media
Light up your social media for Rare Disease Day — frames, profile pics and shareable content.
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11 February 2023
120km for CASK on Rare Disease Day
Lt Col Gareth Hattersley ran 120km from Preston to Catterick on Rare Disease Day — motivated by his niece Sarah.
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16 October 2022
First community fundraiser raises over £1000
Inaugural Bingo night — sell-out audience, fantastic prizes, over £1,500 raised for scientific research.
Read more →8 August 2022
CASK in the UK news
Charity launches £1.2 million fundraising campaign to discover potential treatments for rare brain disease.
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22 June 2022
Families gather for annual meet
Eight families convened at Worcester Snoezelen in July — sensory experiences, soft play, peer support.
Read more →2 April 2022
World Autism Acceptance Week
Medical advisor Dr Laura Powling addresses common parent questions about autism traits, diagnosis and sleep.
Read more →9 March 2022
CASK mum Nikki talks to Humans of New York
Nikki, a mother in the CASK community, was featured in a Humans of New York story.
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6 September 2021
Five families meet for impromptu CASK gathering!
On Bank Holiday Monday 2021, five families gathered at Hobbledown Farm in Epsom — the first meet after pandemic restrictions.
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