Global Advocacy. #NL51. Snippets! #SYNGAPcensus = 1,761. UT Arlington & Cook Children’s. #S10e204

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