Thursday, March 26, 2026 - Week 13
Thanks for NL50 Ed!
cureSYNGAP1.org/NL50, I listened to Episode 1 and, as it turns out, it was March 12, 2021 (five 5️⃣ years ago), and it’s evergreen.
SEVEN THINGS YOU NEED TO DO TO BE READY FOR CLINICAL TRIALS
1. Stay Connected to CURE SYNGAP1
- Fill in the Connect Form
curesyngap1.org/connect
- Have an annual call with Lauren
- Subscribe to the CURE SYNGAP1 Podcast everywhere and to our YouTube.
2. Know your mutation, have your genetic report. Memorize it or get a tattoo.
3. Sign up for our Natural History Studies
- Looking forward: ProMMiS
curesyngap1.org/prommis (Also helps you figure out travel).
- Looking back: Citizen Health
citizen.health/ai-advocate/syngap1
4. Participate in Research, get your mutation affirmed and published.
- Join the CB BioRepository
combinedbrain.org/roadshow
- Give samples early and often, like me last week:
linkedin.com/posts/graglia_syngap1-syngap-ciliopathy-a...