May 2025 Community Call

This is the recording of our May 2025 Community Call.
We experienced an issue with a bot and spammer in the beginning of the call, so you'll notice this video is edited to remove that portion of the content. Unfortunately, we had to lock the call down after that, so we had a small audience, but a great one!
Here's a quick recap of what was discussed, along with pertinent links:
Registration for summer camps https://clovessyndrome.org/news/csc-2...
An upcoming clinical trial https://clinicaltrials.gov/study/NCT0...
Our 30 Day Spark Campaign is running now through May 30 - https://givebutter.com/CSC_30DaySpark
Advocacy and staying informed around public policy decisions and their impact on our community https://everylifefoundation.org/rare-...

Feel free to email us with any additional questions that didn't get to be covered during the call. We'll host another Community Call before CLOVES Awareness Day. 🍀💚