5 days left to register for the conf, #Pipeline, #ProMMiS Protocol, #ORCA Webinar & more #S10e224

Monday, October 26, 2026 — Week 44

DENVER — 5 DAYS TO REGISTER

• Science Day 224. Family Day 180, including 33 kids/Syngapians.
• Family Dinner 57 seats. Registration closes OCT. 31.

Register: https://cureSYNGAP1.org/Reg26 

Dinner: https://cureSYNGAP1.org/Henrys 

Rare Reception: https://cureSYNGAP1.org/RR26 — thank you BioMarin, Lundbeck + Citizen Health.

NEW PIPELINE + COLLABORATION

• Updated SYNGAP1 therapeutic pipeline: https://cureSYNGAP1.org/pipeline
• RAD video — broad collaboration is how rare diseases get treated. https://www.linkedin.com/posts/caleb-moore-4382704_many-terrible-diseases-will-find-treatments-ugcPost-7518359681396989952-8-XH
• Nordli: Referral + Citizen data + COMBINEDBrain connections. He will speak at the conference.

PROMMIS@cureSYNGAP1.org 

• “A prospective natural history study protocol for clinical trial readiness in synaptic disorders.” ProMMiS: 159 people with SYNGAP1-RD enrolled. https://doi.org/10.1002/epi.70374
• Sign up now at Philadelphia or Stanford.

STUDIES + WEBINARS

• DAY-C at CHOP: ages 9–18, especially families unable to do ProMMiS due to travel/behavior. ENDD@chop.edu
• ORCA Webinar #134 with Abby Rader — Nov. 10, 10:30 AM PT / 1:30 PM ET. https://cureSYNGAP1.org/Abby
• ASCEND Webinar #131 now dubbed in 8 languages 🇩🇪🇪🇸🇫🇷🇮🇹🇳🇱🇵🇱🇵🇹
  https://curesyngap1.org/calendar/webinar-131-camp4-syngap1-ascend-phase-1-2-trial/

BIOPACE, ACCESS + PRACTICAL HELP

#BIOPACE26 posts:

SJ https://lnkd.in/p/giMZkm2c (Thx for going to CB Annual Summit in Nashville, next!)

https://www.linkedin.com/posts/graglia_syngap1-biopace26-curesyngap1-activity-7519425517163569152-Q6tF 

• REN + Epilepsy Foundation genetic testing roundtable: https://lnkd.in/p/gq8gf_6s
• Triage Health FREE online conference Nov. 6–7 — insurance, appeals, finances, disability, work + planning. https://triagehealth.org/flyer-conference-november

HEOR / REACH

• Economic + Humanistic Burden Study with Global Genes, Kielo Research + Citizen Health.
• Family input now → survey early 2027. https://cureSYNGAP1.org/PR51

TRANSPARENCY

• Five years of audited financials: https://curesyngap1.org/finances/

PUBMED

• YTD: 59. +15 vs Week 44. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1

SOCIAL MATTERS

5.35k LinkedIn https://www.linkedin.com/company/cureSYNGAP1 

1.64k YouTube https://www.youtube.com/@CureSYNGAP1 

11k X https://x.com/cureSYNGAP1 

43k Insta https://www.instagram.com/cureSYNGAP1/ 

Like + subscribe https://cureSYNGAP1.org/podcasts/syngap10 

Episode 224 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy