The CASK Coalition

The CASK Coalition is a group of like-minded collaborative CASK research non-profits with shared goals.

Our aim is to unify and leverage the collective efforts of CASK foundations toward advancing treatments and a Cure for CASK disorders.

“We truly believe that working together gives our children the best possible chance”

We work together with the mutual goal of finding a treatment or cure for CASK disorders. 

The Members of the coalition are highly collaborative with one another, by:

  • offering support
  • sharing knowledge
  • utilising skills to assist one another
  • exchanging ideas, and
  • sharing contacts.

FAQ's

The CASK Coalition offers a framework that facilitates collaboration among member CASK foundations, minimizes duplication in activities that can be managed on a global scale, and encourages greater engagement with the global CASK community to further research efforts and raise awareness collectively.

We support the adoption of best practices and the maintenance of transparency in the non-profit CASK sector.

To foster collaboration among CASK non-profits and researchers, expediting the journey toward finding a treatment or cure for CASK disorder.

To enable one louder voice of advocacy rather than many small voices. 

A world where a treatment or a cure for CASK disorders is found quickly as a result of collaboration. 

Committed – Collaborative – Expeditious 

With roughly 300 confirmed diagnoses, the CASK community is small and dispersed across many countries. United by a Facebook group that offers a critical platform for sharing information and providing support across CASK families, the community is currently represented by multiple foundations spanning the globe.  Given the size of the community and the enormous obstacles to advancing treatments and a cure for rare diseases, the CASK community benefits from collaboration in defining a community-wide research Road Map, promoting unified data collection, and undertaking fundraising and outreach collectively.

Are you a CASK non-profit or parent advocate group?  We are open to new members. 

Member Participation Guidelines

Member Rules 

Please message us  for more information. 

The CASK community has partnered with non-profit RARE-X to build a CASK registry, or Data Collection Program, for families with children diagnosed with a CASK mutation. When you participate in the CASK Data Collection Program, you’ll help accelerate research and the development of new drugs, devices, and other therapies. 

Sign up today and play your part in fighting this rare disease!

Find your CASK Coalition member

Meet Bella

Our dragonfly mascot, Bella, was carefully chosen to represent our community.

The dragonfly, being beautiful and delicate, represents the fragility of our children as well as their innate beauty.

In addition, many of our community are diagnosed by an MRI showing the cerebellum shaped like a dragonfly.  It is important that we raise awareness of this fact amongst the medical community, to ensure a speedy and accurate diagnosis.

The name Bella links to the important role the cerebellum plays in our children’s disorder as well as meaning ‘beautiful’.

Race for Research video

This April we are holding our second annual CASK Race for Research. This is a virtual event that can be participated in anywhere in the world.

More information.

Animation

Short introduction to CASK related disorders 

CURECASK launch

In 2024 the CASK Coalition launched their first jointly funded research project. The CURE CASK project is led by Dr Kyle Fink at University of California, Davis. Dr Fink’s lab is using state of the art techniques to reactivate the silenced CASK gene in cell lines. If successful, this will create an exciting avenue for a future treatment for MICPCH in females. 

Life with CASK

A raw glimpse into the lives of members of the CASK Coalition and the researchers and clinicians supporting them.

CASK Coalition in the News

Join our coalition

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