The Project CASK Podcast is a place for the CASK community to gather to share our stories, deepen our connections, learn from each other and from others, and hopefully find laughter and joy as we travel this rare disease journey together.
[The Roar Ep. 10] Banana Splits & Big Dreams... Making A Splash For CASK gene disorders
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 (https://givebutter.com/Liocorn/join)
Learn more: projectcask.org (https://projectcask.org)
Follow us on social: @projectcask
13 Jun 2025
[ The ROAR Ep. 9 ] Gene Therapy updates and community action plan
This episode discusses gene therapy advancements, cerebellar degeneration, sample collection for the CASK biorepository, and community action plans for rare and medically complex kids.
21 Mar 2025
[ The ROAR #8 ] 2025 March Updates
The latest episode of [ The Roar ] is here!
This episode, we’re diving into:
🩵💜🩷 A huge thank you to our community for your incredible Rare Disease Day advocacy—your voices matter!
🔬 [1:00] Research updates - what’s happening behind the scenes on CASK gene research
🎨 [5:15] The Ultra Rare Collection fundraiser – Join us, share and follow
@ultrararecollection
⚖️ [7:35] Federal budget cuts & advocacy for Medicaid – Sharing our stories to help build understanding of the importance of Medicaid, the Everylife Foundation for Rare Diseases, and Project CASK-funded research is still moving forward!
+ Medicaid and Federal Funding take action with Everylife Foundation:
https://everylifefoundation.org/rare-advocates/take-action/
+ Sign up for Citizen Health + Project CASK:
https://www.citizen.health/partners/project-cask
+ Create your personalized Liocorn Donation page:
https://givebutter.com/Liocorn/join
+ Register with Project CASK:
https://www.projectcask.org/register
Reach and audience
Public platform figures. Ratings count people who left a rating, not total listeners.
YouTube views
1,092
Score snapshot 15 Sept 2025
Apple Podcasts (US)
5.0 / 5
3 ratings
Spotify
5.0 / 5
3 ratings
Podcast Authority Score: 56 / 100
A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.
Quality
62
Social presence
0
YouTube
68
Engagement
60
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