Travel! CAMP4 EU + Stoke Mention #SYNGAP1, Guanfacine, Sleep EEG & Record Conf #S10E225
Episode Description
Friday, November 6, 2026 — Week 45
CURE SYNGAP1 ON THE ROAD
- I spoke at the SYNGAP1 UK Family Conference; Kathryn + I then met Peter Kind’s team at SIDB / Patrick Wild Centre in Edinburgh. https://curesyngap1.org/calendar/syngap1-uk-2026-family-conference | https://sidb.org.uk | https://patrickwildcentre.com
- Kathryn joined Virginie at FAST in Orlando. https://cureangelman.org/summit
- Suzanne represented us at COMBINEDBrain in Nashville. https://www.combinedbrain.org/event-6741756
- Two weeks ago Suzanne + I were at BIO PACE in D.C. https://pace.bio.org
- Four of us representing CURE SYNGAP1 US across science, advocacy + rare-disease collaboration.
INDUSTRY PIPELINE - https://curesyngap1.org/pipeline
- CAMP4 Q3: ASCEND launched; EU, UK, Australia + Argentina cleared; first CMP-002 patient expected by year-end.
- Stoke Q3: lead optimization underway for a SYNGAP1 candidate; Acadia collaboration active.
- Praxis Q3 due Nov. 9 — watching PRAX-090.
- GondolaBio: private; SYNGAP1 listed, previously in lead optimization.
PAPER! GUANFACINE
- SYNGAP1 mice showed excess noradrenergic arousal; guanfacine reduced it and restored visual cortical coding precision. https://cureSYNGAP1.org/Guanfacine
PAPER! SLEEP / EEG — BEACON
- Home dry EEG: 30 enrolled; 23 had >1 hour usable data; interictal discharges in 22/23; sleep efficiency/stages altered. Preprint. https://www.linkedin.com/posts/characterization-of-sleep-spectral-and-share-7523368556156178433-MB9a
DENVER IN 27 DAYS!
- 255 Science Day; 206 Family Day incl. 36 kids/Syngapians. Record turnout.
- Late registration: email Lauren for the link. Deadline Nov. 16.
- Thursday Rare Reception: https://cureSYNGAP1.org/RR26
- Friday dinner: 33 seats left. https://cureSYNGAP1.org/Henrys
REPURPOSED DRUGS
- Nortriptyline & NALL trial discussions continue.
- Corey Baysden: repurposed drug → life-changing benefit → Ravicti coverage. https://www.facebook.com/photo/?fbid=10164868478874280&set=a.10150174820609280
COMMUNITY
- Ryker #103, now 15: https://cureSYNGAP1.org/Ryker
- Naya, now 9: https://cureSYNGAP1.org/Naya
- Warrior #239 Kai, Spain: https://cureSYNGAP1.org/Warrior
- Lee & Zimmy volleyball raised $15K: https://www.leeandzimmyclassic.com/
PROMMIS - https://curesyngap1.org/prommis/
- ENDD newsletter: https://curesyngap1.org/blog/endd-connections-issue-1-fall-2026/
- Not in yet? Sign up ASAP at CHOP or Stanford.
PUBMED + SCIENCE
- PubMed 2026: 61 — +16 vs Wk45; tied with full-year 2025. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&timeline=expanded
USA — ICD-10: F78.A1
SOCIAL MATTERS
LinkedIn 5,385: https://linkedin.com/company/curesyngap1
YouTube 1.64K: https://youtube.com/@CureSYNGAP1?sub_confirmation=1
Instagram: 43k https://instagram.com/curesyngap1
Like + subscribe https://cureSYNGAP1.org/podcasts/syngap10
Episode 225 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy



























