Global Advocacy. #NL51. Snippets! #SYNGAPcensus = 1,761. UT Arlington & Cook Children’s. #S10e204
About this episode
The episode discusses global advocacy efforts for SYNGAP1, including census updates and fundraising events.
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…
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