# @curesyngap1 on YouTube

- **Type:** Video
- **Original URL:** https://youtube.com/watch?v=fuspFZBB8OA
- **Gondola URL:** https://gondola.cc/posts/71292235-curesyngap1-youtube
- **Thumbnail:** https://img.gondola.cc/tr:w-,h-,fo-auto/postThumbnails/8ecd37467c.jpg
- **Posted:** 2026-09-26T17:57:46.000+00:00
- **Account Owner:** SynGAP Research Fund (SRF) (@cureSYNGAP1) — https://gondola.cc/cureSYNGAP1

## Caption

Saturday, September 26, 2026 — Week 39
 
CAMP4 ASCEND — WEBINAR #131
- SYNGAP1 ASCEND Phase 1/2 Trial: What You Need To Know.
- Monday, Sept. 28 — 12 PM PT / 3 PM ET / 19:00 UTC.
- Families: come hear directly from CAMP4 + ask your questions. https://cureSYNGAP1.org/AscendCT
 
ARGENTINA — PATH TO THE CLINICAL TRIAL
- CAMP4 + LATAM hybrid meeting: “Path to the Clinical Trial in Argentina.”
- Remember how they got here: THE CONFERENCE. Community → relationships → trial readiness.
- Recording: https://youtu.be/UuhOIzSEKH4
 
SYNGAP1 LEADERS REPRESENTING OUR COMMUNITY
- Incoming Board Chair Eric Moulton at Newborn Screening Bootcamp in DC. Critical that SYNGAP1 is involved in NBS — find patients sooner. Thank you RARE Foundation. https://www.rareadvocates.org/newborn-screening-bootcamp/
- Vicky Arteaga + Allison Hirsch represented CURE SYNGAP1 at Rare Diseases International at the UN. https://www.linkedin.com/posts/rare-diseases-international_unga81-rarediseases-globalhealth-activity-7508918814357610496-xtZS
 
WARRIORS
- Wednesday Warrior #237: Matteo in NYC — happy 1st birthday! https://cureSYNGAP1.org/Warrior
 
TAKE RESPIRATORY SERIOUSLY — JAXON IN ICU
- Aaron Harding documented Jaxon’s ICU experience day-by-day. A difficult family experience worth reading directly. Add serrapeptase to your regime. 
- Aaron’s posts: https://www.facebook.com/aaron.j.harding.5
- Willsey paper: https://pmc.ncbi.nlm.nih.gov/articles/PMC11885846/ Another paper is coming soon.
 
COMMUNITY IN ACTION
- LATAM: One Voice for SYNGAP1 — VOCES! https://cureSYNGAP1.org/Voces
- Auburn Delta Sigma Phi + Wyatt Jones: Delta Sig for SYNGAP1. https://cureSYNGAP1.org/auburn26
 
CURE SYNGAP1 CONFERENCE — DENVER
- Dec. 3–4. Science Day: 156 registered. Family Day: 137, including 27 kids/Syngapians.
- REGISTRATION ENDS OCT. 31. Hotel rooms going fast — register + book now. https://cureSYNGAP1.org/Reg26
 
PUBMED + SCIENCE
- PubMed 2026: 54. +15 vs Week 39. Last year finished at 61, +9 vs the year. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date
- NEW: Pekka Postila team — years of CURE SYNGAP1 support + partnership studying missense mutations.
- Molecular modeling supports canonical RasGAP + Plexin-like RapGAP mechanisms; missense variants can disrupt protein stability AND catalysis; other insights.
- Paper: https://doi.org/10.1016/j.yjsbx.2026.100162
 
USA: Use ICD-10 code F78.A1.
 
SOCIAL MATTERS
5,288 LinkedIn. https://www.linkedin.com/company/cureSYNGAP1/
1.62K YouTube. https://www.youtube.com/@CureSYNGAP1
11.1K X. https://twitter.com/cureSYNGAP1
43.7K Instagram. https://www.instagram.com/cureSYNGAP1/
 
Like + subscribe wherever you listen. https://cureSYNGAP1.org/podcasts/syngap10/
Episode 221 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy

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## Tags

patientadvocacy, curesyngap1, syngap1, 237, syngap10, podcast, 131

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