CAMP4 ASCEND Webinar + #SYNGAP1 Goes Global: Argentina, UN, Newborn Screening & Jaxon in ICU #S10E221

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