Skip to main content
Health Podcast Library
Episode 217

Big Week for #SYNGAP1: Trials, Data, #Epilepsy, Palo Alto & Athens #S10E216

Episode Description

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

Proudly Supported by

Forvis MazarsHeadlinerBetterHelpCalendarPAAAOSmowPod

Patrons of Health Podcast Library

AAOS Career Podcast
Achieving Health
OrthoInfo
AAOS Now Podcast
Aging Like a Pro
Who the Health Cares? with Prof Michael Sparer
Stronger After Stroke

Supporting Shows

Hopeful Hints
HITea With Grace
Faces of Digital Health
Thriving with Addiction with Dr. Jonathan Avery
Cuts and Consults
Nurse Rosa's INsights
Coaching Healthcare Leaders
Healthcare for Humans
This Just In Radio Show
Coffee Break: Breaking the Cycle of Bullying in Healthcare, One Cup at a Time
Speak Up For Your Health
HIT Like a Girl Pod: Empowering Women in Health IT
Beyond The Paper Gown Podcast

We use cookies to run this site. Analytics cookies help us understand how you use it and are off until you say yes. You can change your mind at any time from the privacy preferences icon at the bottom right.We use cookies to run this site and to understand how it's used. You can opt out at any time from the privacy preferences icon at the bottom right. Cookie policy