Global Advocacy. #NL51. Snippets! #SYNGAPcensus = 1,761. UT Arlington & Cook Children’s. #S10e204
Episode Description
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
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!
5TH SCRAMBLE FOR SYNGAP, SC – 174 days
Classic case of a small event becoming an institution!
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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