🎙️The latest episode of the ROAR is here, full of exciting updates and real ways you can help move the needle for the CASK community.
Here’s what’s inside:
🧬 What recent progress in gene replacement trials means for our CASK kids and why it matters
https://youtu.be/_wZ3-GUuyBc?si=A6ZcqCiNKCgj7yS2
🧠 A spotlight on the 2nd CASK Scientific meeting - collaboration for acceleration plus a deeper look at cerebellar degeneration
🧪 How our sweet CASKies can participate in sample collection for the CASK biorepository hosted by COMBINEDBrain and the biomarker study
https://www.projectcask.org/cask-assets
💛 Why developing therapies takes more than just funding studies and what we all can do
https://www.citizen.health/partners/project-cask
🌊 How families can Make a Splash for CASK this August to advance breakthroughs our kids urgently need
https://givebutter.com/Liocorn/join
🗣️ Why now’s the time to contact your senators and help protect Medicaid for rare and medically complex kids
https://everylifefoundation.org/rare-advocates/take-action/
🗓️ And how we’re building toward CASK Gene Awareness Day on July 15, a moment to raise our voices together
https://www.twibbonize.com/profile
Get ready, get set and ROAR! We may be rare, but together we’re loud, loving, and unstoppable.
🎙️ Listen here: https://youtu.be/X3DoyBRXUoU
