#RareDiseaseWeek! We are doing much beyond grants… too much. Get the Citizen Health App! #S10e200

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