#RareDiseaseWeek! We are doing much beyond grants… too much. Get the Citizen Health App! #S10e200
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About this listen
Wednesday, February 25, 2026 - Week 9
Thank you Virginie, Eric & Paulina for being in Cold DC right now with the Everylife Foundation! https://www.linkedin.com/posts/curesyngap1_raredc2026-syngap1-curesyngap1-activity-7432425642295586816-IVDQ
NATURAL HISTORY STUDY
Sign up for Citizen Health cureSYNGAP1.org/Citizen and ProMMiS cureSYNGAP1.org/ProMMiS
And now the Citizen Health App on iOS https://www.linkedin.com/posts/graglia_your-advocate-is-now-with-you-in-every-moment-activity-7432260543748579328--dva
Board meeting… key message, we are much more than fundraising, grants and patient support. Here is our list of non-grant projects.
- Fundraising
- Regulatory - Industry
- Regulatory - FDA
- Clinical Trial Readiness
- Standard of Care
- Patient Engagement
- Health Economics https://www.linkedin.com/posts/graglia_the-economic-impact-of-caregiving-for-individuals-activity-7431827551574011904-HvA4
- Global Coordination
- Next steps with NALL
- Patient Support
- Next steps with Nortriptyline
BIOSAMPLES & EEGs!
Biorepository needs more samples. Check out the list and map here https://combinedbrain.org/roadshow/ and contribute both blood & EEGs. The data and research we do with these samples is invaluable. Let us know if you are going, email our CSO@curesyngap1.org
FUNDRAISING - SPRINT4SYNGAP
Sprint is April 25 - our calendar page - cureSYNGAP1.org/Sprint - has all the information in the following links:
Also, May 28, San Francisco, CA: cureSYNGAP1.org/SF26
Scramble for Syngap - 5th annual on October 3 in S. Carolina cureSYNGAP1.org/Scramble26
PUBMED
Pubmed 2026 is at 9, just like last week but am I seeing some amazing manuscripts! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date (Remember we had 18 in all of ‘18)
SOCIAL MATTERS
4,700 LinkedIn. https://www.linkedin.com/company/curesyngap1
1,530 YouTube. https://www.youtube.com/@CureSYNGAP1
11.2k Twitter https://twitter.com/cureSYNGAP1
45k Insta https://www.instagram.com/curesyngap1
$CAMP stock is at $4.70 on 24 Feb. ‘26 https://www.google.com/finance/beta/quote/CAMP:NASDAQ
Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10/
Episode 200 of #Syngap10 #CureSYNGAP1 #Podcast