
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
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CAMP4 ASCEND Webinar + #SYNGAP1 Goes Global: Argentina, UN, Newborn Screening & Jaxon in ICU #S10E221

ASCEND Trial Webinar + #SYNGAP1 Warriors, Biobank, HEOR & Industry News #S10E220

UK MHRA Approves CAMP4 ASCEND + USA Today + Rare-X/Citizen Health + 6 Things #S10E219

USA Today, Synchrony Conf, #EEC2026, Portugal & Family Resources — #CureSYNGAP1 in Action #S10E218
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