USA Today, Synchrony Conf, #EEC2026, Portugal & Family Resources — #CureSYNGAP1 in Action #S10E218

Tuesday, September 8, 2026 — Week 37

DON’T MISS ASO UPDATE
Episode 217 came out over the weekend. Don't miss it. There was lots of ASO news in there.
https://www.linkedin.com/feed/update/urn:li:activity:7502544874399928322/

NATIONAL PRESS

USA TODAY Special-needs care / education crisis — and a SYNGAP1 family featured. Diagnosis and future therapies aren't enough. Families need care, education and support today.

https://www.linkedin.com/posts/bernadette-basilico-6924b29a_a-two-year-postdoctoral-position-with-share-7500493855591432192-sOD6/

https://www.usatoday.com/story/life/health-wellness/2026/09/01/kids-special-education-school-shortage-care/90851980007/

ADVOCACY UPDATE

SYNCHRONY — PALO ALTO

KAH + I attended the BRAIN Foundation's Synchrony symposium.

The autism community is starting to wake up to neuroinflammation, and mental health psychiatrists are really working hard on this topic. There are also people looking more at the impact of diet. https://brainfoundation.org/synchrony-symposia/

ILAE #EEC2026 — ATHENS

Virginie + Jaime + Vicky + Katrine representing SYNGAP1 at the 16th European Epilepsy Congress, Sept. 5–9. https://www.ilae.org/eec2026
Virginie’s Post: https://www.linkedin.com/posts/virginie-mcnamar_eec2026-ugcPost-7502600886368559105-LPbu/

THINGS YOU CAN DO RIGHT NOW

1. GENEDX SURVEY

How has getting a SYNGAP1 diagnosis improved your child's care?

5 minutes. Worth it. Please do it. https://curesyngap1.org/GDXsurvey

1. ARI / CITIZEN HEALTH

Sign up. Longitudinal medical records → research-ready data.

This is clearly the future. https://citizen.health/ari/syngap1

1. SYNGO

SYNGAP1 resource for families from LATAM, ask it to speak English! https://curesyngap1.org/syngo

COMMUNITY GROWTH AND SUCCESS

CURE SYNGAP1 PORTUGAL  🇵🇹

Congratulations to the Portuguese SYNGAP1 community — legal organization established + website live.

Special applause for Henrique’s leadership. Another national organization building local advocacy and community. https://curegyngap1-portugal.org/en

SCRAMBLE FOR SYNGAP — SOLD OUT

Congratulations to the Scramble team — the 5th Annual Scramble for SYNGAP is SOLD OUT.

25 days to go. A great example of a community building momentum year after year. https://mailchi.mp/796f3e59d71b/the-scramble-for-syngap-is-sold-out?e=b5a3afc6ba

 

UPCOMING EVENTS — COUNTDOWN

SHOOT FOR SYNGAP1 — 67 DAYS

November 14 — Hurricane, Utah
Aiming for a Cure — Shooting for Hope https://cureSYNGAP1.org/Shoot

FIGHT FOR FELIPE — 81 DAYS

November 28 — Boston, Massachusetts https://cureSYNGAP1.org/Fight

CURE SYNGAP1 CONFERENCE — 86 DAYS

December 3–4 — Denver, Colorado https://cureSYNGAP1.org/Reg26

PUBMED

50 SYNGAP1 publications in 2026. +13 vs. Week 37. https://pubmed.ncbi.nlm.nih.gov/42692765/

Last year finished at 61 publications — +9 vs. the year. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date

USA 🇺🇲: Use your ICD-10, F78.A1

SOCIAL MATTERS

5,220 LinkedIn — https://www.linkedin.com/company/curesyngap1

1.61k YouTube https://www.youtube.com/@CureSYNGAP1

11.1k X https://x.com/cureSYNGAP1

43.7k Instagram https://www.instagram.com/curesyngap1

Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10

Episode 218 of #Syngap10 #SYNGAP1 #ASO #AngelmanSyndrome #AlexanderDisease #RareDisease #CureSYNGAP1 #PatientAdvocacy