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CASK Research

Our Work

What we do

CASK Research Foundation is a UK charity with a mission to enable medical advances to improve the lives of people with CASK gene disorders.

Founded in 2022 by a UK mum, we have raised over £100,000 for research into the CASK gene and CASK disorders, and recruited more than seven universities to study CASK for the first time.

Our activities

  • We invest in high-quality research projects internationally such as the CURE CASK project, as well as pioneering work in UK's leading universities.
  • We coordinate the UK's patient registry for CASK-related disorders in collaboration with the University of Bristol. This will be essential to delivering clinical trials and campaigning for treatments to be approved here in the UK.
  • We work with clinicians to develop best-practice guidelines.
  • We provide families with health information and resources.
  • We host an annual UK family meet.
  • We provide online workshops and up-to-date information via our website, social media platforms and online socials.
  • We advocate for treatment for CASK-related disorders.

We need your help to continue our work. Please get in touch — info@caskresearch.org.

Dragonfly Love — CASK Research
Laura at Parliament, February 2026 At the Rare Summit Bingo night fundraiser Great South Run runners CASK stall at a conference Laura at GW4 epilepsy

Our objectives

  • To make grants available to enable scientists to study the CASK gene and its related disorders
  • To form partnerships with other charitable organisations
  • To promote collaboration between CASK scientists around the world

Our approach

  • We seek funding using a variety of approaches from community fundraising to external grants.
  • We have strict and fair criteria for research proposals and a rigorous review process.
  • We have a first-rate Scientific Advisory Board ensuring only the finest research is conducted.
  • We are part of the CASK Coalition — a group of like-minded organisations who prioritise working together to try to find treatments for individuals with a CASK disorder.

Read our end of year report →

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