1,871 #SYNGAP1 Census, COMBINEDBrain RR-RGND, Conference Dinner/Drinks & $200K Unlock Match #S10e222

Friday, October 2, 2026 — Week 40

 

CENSUS — 1,871 AND GROWING

• Q3 census: 1,871 known patients, +65 this quarter.
• First patient in Rwanda. USA +11, China +16, Brazil +6, France +4.
• Finding patients matters more than ever as trials approach. https://cureSYNGAP1.org/Census

 

COMBINEDBRAIN — RARE RESEARCH ROUNDTABLE

• Wonderful Rare Research Roundtable on Genetic Neurodevelopmental Disorders. COMBINEDBrain is a gift to the rare neuro community — hug them when you see them. https://combinedbrain.org/RR-RGND
• Dr. Emma James of Encoded, chair of our IAB, posted about the meeting. https://www.linkedin.com/posts/emma-james-71759a1a_the-combinedbrain-research-roundtable-on-ugcPost-7511223599165472768-jDkI

 

CURE SYNGAP1 CONFERENCE — DENVER

• 9 Family Legacy Sponsors, up from 8 in 2025.
• Thursday Rare Reception — free, register: https://cureSYNGAP1.org/RR26
• Friday Family Dinner at Henry’s: https://cureSYNGAP1.org/Henrys
• Conference registration ends OCT. 31. https://cureSYNGAP1.org/Reg26

 

UNLOCK THEIR TOMORROW

• Q4 goal: $500,000 by Dec. 31, including a $200,000 match.
• Families can start their own fundraiser; anyone can donate. https://cureSYNGAP1.org/Unlock
• Your Idea. Your Fundraiser. Your SYNGAP1 Impact. https://curesyngap1.org/blog/your-idea-your-fundraiser-your-syngap1-impact

 

COMMUNITY ACTION

• RARE Disease Week 2027, March 2-4, in DC.  Travel reimbursement applications are open; deadline Nov. 6. https://bit.ly/4jo7fku
• RARE Foundation travel reimbursement post: https://www.facebook.com/share/p/1EeF8jTWFi
  • Sign up for ARI: https://cureSYNGAP1.org/Ari

 

WARRIORS — JACK

• Jack is a 3-year-old from Berkeley who missed early milestones and was diagnosed with SYNGAP1 around age 3 after eyelid-fluttering episodes led to EEG, MRI and genetic testing. https://curesyngap1.org/syngap-warriors/jack-w

 

NEWSLETTER #52

• All the latest news and links in one place: https://cureSYNGAP1.org/NL52
• Subscribe: https://cureSYNGAP1.org/Newsletter

 

PUBMED + SCIENCE

• PubMed 2026: 54. +14 vs Week 40. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date

 

USA - Use your ICD-10: F78.A1

 

SOCIAL MATTERS

5,301 LinkedIn. https://www.linkedin.com/company/cureSYNGAP1

1.63k YouTube. https://www.youtube.com/@CureSYNGAP1

11.0k X. https://twitter.com/cureSYNGAP1

43.4k Instagram. https://www.instagram.com/cureSYNGAP1

 

Like + subscribe wherever you listen. https://cureSYNGAP1.org/podcasts/syngap10

 

Episode 222 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy