# @curesyngap1 on YouTube

- **Type:** Video
- **Original URL:** https://youtube.com/watch?v=OZDMg6xPytQ
- **Gondola URL:** https://gondola.cc/posts/71292231-curesyngap1-youtube
- **Thumbnail:** https://img.gondola.cc/tr:w-,h-,fo-auto/postThumbnails/2c090063b6.jpg
- **Posted:** 2026-10-02T21:25:11.000+00:00
- **Account Owner:** SynGAP Research Fund (SRF) (@cureSYNGAP1) — https://gondola.cc/cureSYNGAP1

## Caption

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

## Stats

- **Views:** 100
- **Likes:** 5
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- **Comments:** 2

## Tags

patientadvocacy, curesyngap1, syngap1, 52, syngap10, podcast

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