August is here — and so is Make a Splash for CASK, our annual global fundraiser to raise awareness and fuel therapeutic development for CASK gene disorders.
In this episode of The ROAR, Project CASK co-founder Hitomi Kubo invites listeners behind the scenes to learn how research, community, and creativity come together in our mission to find treatments and a cure for CASK. Using a memorable banana split ice cream sundae metaphor, Hitomi walks through the essential ingredients needed to build a successful rare disease nonprofit — and the powerful impact of community-led fundraising.
You’ll learn:
Why deep understanding of CASK gene disorders is essential to progress — including the world’s first CASK prevalence study, community-reported symptom data, and strategic scientific collaboration.
How Project CASK is building research infrastructure — from mouse models and brain organoids to a biorepository of CASK samples.
What cutting-edge therapeutic programs we’re funding — including gene replacement therapy, small molecule strategies targeting cerebellum degeneration, and an in-depth epilepsy study.
Why education and outreach matter — and how we’re equipping families, clinicians, and the public with tools to drive awareness and advocacy.
How your participation in Make a Splash for CASK powers every part of this mission — and why every single fundraiser makes a difference.
Whether you're a parent, researcher, or advocate, this episode will inspire you to get involved — and give you the roadmap for how community engagement translates into real progress for ultra-rare CASK disorders.
Join the Movement:
Make a Splash for CASK this August by signing up: givebutter.com/Liocorn/join
Learn more: projectcask.org
Follow us on social: @projectcask
