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SynGAP10 weekly 10 minute updates on SYNGAP1  

SynGAP10 weekly 10 minute updates on SYNGAP1

Author: 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
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Language: en

Genres: Business, Health & Fitness, Medicine, Non-Profit

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Global Advocacy. #NL51. Snippets! #SYNGAPcensus = 1,761. UT Arlington & Cook Children’s. #S10e204
Episode 205
Tuesday, 14 April, 2026

Tuesday, April 14, 2026 - Week 16   Census is 1,761 https://curesyngap1.org/blog/syngap1-census-2026-update-54-q1-total-1761   Trip to Texas for UT Arlington and Cook Children's Systems innovation with Dr. Lal and Dr. Perry My post: https://www.linkedin.com/posts/graglia_raredisease-activity-7448087944466259970-MADW?utm_source=share *** Dr. Lal’s post: *** https://www.linkedin.com/posts/dennis-lal-71a8988a_epilepsies-neurodevelopmentaldisorders-raredisease-activity-7449111793991577600-sfXZ   ProMMiS patients - 164 unique patients, 96 of whom have had 2 visits & 46 others 3-5 visits https://curesyngap1.org/resources/studies/syngap1-prommis   Citizen - 289 registered https://www.citizen.health/ai-advocate/syngap1   Victoria Arteaga representing CURE SYNGAP1 at IBE Global Leaders Meeting  https://www.linkedin.com/posts/victoria-arteaga-26913433_syngap1-rareepilepsy-dee-activity-7449587651885621248-UD9v   Newsletter 51 www.cureSYNGAP1.org/NL51   SYNGAP1 Snippets  You are in this for life.   Board meetings to approve budgets, fundraising has never been more important.   6th ANNUAL SPRINT FOR SYNGAP1, EVERYWHERE – 12 days - $169k! Go Tavilla. 17 teams raised $265K last year; this year, we have 24 teams who have raised almost $170K so far. https://curesyngap1.org/calendar/sprint4syngap-2026   INAUGURAL SF NIGHT OF IMPACT, CA – 46 days Join us this is our only Gala for 2026! cureSYNGAP1.org/SF26   5TH SCRAMBLE FOR SYNGAP, SC – 174 days  Classic case of a small event becoming an institution! cureSYNGAP1.org/Scramble26 PUBMED Pubmed 2026 is at 24. +8 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date   SOCIAL MATTERS 4,869 LinkedIn.  https://www.linkedin.com/company/curesyngap1 1.55k YouTube.  https://www.youtube.com/@CureSYNGAP1 11.1k Twitter https://twitter.com/cureSYNGAP1 45k Insta https://www.instagram.com/curesyngap1   $CAMP closed at $4.64 yesterday. https://www.google.com/finance/beta/quote/CAMP:NASDAQ   Like and subscribe to this podcast wherever you listen.  https://curesyngap1.org/podcasts/syngap10 Episode 204 of #Syngap10 #CureSYNGAP1 #Podcast

 

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