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SynGAP10 weekly 10 minute updates on SYNGAP1Author: Syngap Research Fund, 501(c)(3)
Over 1,600 families are caring for a loved one with the rare disease SynGAP resulting from a variant of the SYNGAP1 gene. This weekly podcast is for them. -A quick summary of the latest news in the space. The host is Mike Graglia, co-founder & managing director of CURE SYNGAP1. CURE SYNGAP1 is a parent-led public charity in the US that strives to accelerate research into treatments for SYNGAP1 so that we can help our loved ones in a timeframe that matters. Learn more at https://cureSYNGAP1.org Language: en Genres: Business, Health & Fitness, Medicine, Non-Profit Contact email: Get it Feed URL: Get it iTunes ID: Get it |
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#RareDiseaseWeek! We are doing much beyond grants… too much. Get the Citizen Health App! #S10e200
Episode 201
Wednesday, 25 February, 2026
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
