Sunday, August 30, 2026 — Week 36

TRIALS & DATA — CAMP4, RARE-X + ProMMiS CAMP4 / CMP-002

Rare-X + ProMMiS

  • Rare-X is our PRO partner for the ProMMiS Natural History Study.
  • IMPORTANT: Families participating in ProMMiS need to complete their Rare-X surveys within SEVEN DAYS of their ProMMiS Natural History Study visit date.
  • We need the patient/caregiver-reported data to line up with the clinical visit data.

ProMMiS: https://curesyngap1.org/resources/studies/syngap1-prommis/

Rare-X: https://cureSYNGAP1.org/RAREX 

ARI WEBINAR

If you missed the Ari webinar, the recording is now available. https://cureSYNGAP1.org/AriWeb 

FUNDRAISE WITH US

Please call us to set up your fundraisers.  Please do not use Facebook fundraising unless it's an emergency.

CURE SYNGAP1 ON THE ROAD — BRAIN FOUNDATION

Kathryn and I are attending the BRAIN Foundation’s Synchrony 2026 scientific summit in Palo Alto.

A chance for CURE SYNGAP1 to stay close to work happening across autism, neurology, genetics, biomarkers and therapeutics. https://brainfoundation.org/synchrony-symposia/

ILAE — EUROPEAN EPILEPSY CONGRESS

Virginie is heading to Athens for the 16th European Epilepsy Congress, September 5–9.

If you are going to be at the ILAE meeting in Athens, Greece, reach out to Virginie and connect with CURE SYNGAP1 in person. https://www.ilae.org/eec2026 UPCOMING EVENTS — COUNTDOWN

SCRAMBLE FOR SYNGAP — 34 DAYS October 3 — Greer, South Carolina 5th Annual Scramble for Syngap https://cureSYNGAP1.org/Scramble

SHOOT FOR SYNGAP1 — 76 DAYS November 14 — Hurricane, Utah Aiming for a Cure — Shooting for Hope https://cureSYNGAP1.org/Shoot

FIGHT FOR FELIPE — 90 DAYS November 28 — Boston, Massachusetts https://cureSYNGAP1.org/Fight

CURE SYNGAP1 CONFERENCE — 95 DAYS December 3–4 — Denver, Colorado Early bird pricing ends August 31! https://cureSYNGAP1.org/Reg26

PUBMED

PubMed 2026 is at 49. +2 since Episode 214. +13 vs. the week. Last year finished at 61, +9 vs. the year. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date

Coolest new paper: TBE on EEG.  https://pubmed.ncbi.nlm.nih.gov/42620081/ 

USA 🇺🇲: Use your ICD-10, F78.A1

SOCIAL MATTERS

5,195 LinkedIn. +36 since Episode 214. https://www.linkedin.com/company/curesyngap1 1.61k YouTube. https://www.youtube.com/@CureSYNGAP1 11.1k Twitter https://twitter.com/cureSYNGAP1 43.7k Insta https://www.instagram.com/curesyngap1

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

Episode 216 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy

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