CURE SYNGAP1 PODCAST aka SYNGAP10

SYNGAP10 is a 10 minute weekly blog to keep parents and families up to date on what the team at SynGAP Research Fund (SRF) is doing to advocate for patients& advance research into SYNGAP1. If you do nothing else, listen to or watch this and let us know what you think.

CURE SYNGAP1 PODCAST aka SYNGAP10 is a business podcast hosted by Syngap Research Fund, 501(c)(3), with 220 episodes on record and a Required Pod Score of 80.

Syngap Research Fund, 501(c)(3) hosts CURE SYNGAP1 PODCAST aka SYNGAP10, a business show with 220 episodes published.

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  Episode #223

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

  Oct 2, 202610 min

  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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  Episode #222

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

  Sep 26, 202610 min

  Saturday, September 26, 2026 — Week 39 CAMP4 ASCEND — WEBINAR #131 - SYNGAP1 ASCEND Phase 1/2 Trial: What You Need To Know. - Monday, Sept. 28 — 12 PM PT / 3 PM ET / 19:00 UTC. - Families: come hear directly from CAMP4 + ask your questions. https://cureSYNGAP1.org/AscendCT ARGENTINA — PATH TO THE CLINICAL TRIAL - CAMP4 + LATAM hybrid meeting: “Path to the Clinical Trial in Argentina.” - Remember how they got here: THE CONFERENCE. Community → relationships → trial readiness. - Recording: https://youtu.be/UuhOIzSEKH4 SYNGAP1 LEADERS REPRESENTING OUR COMMUNITY - Incoming Board Chair Eric Moulton at Newborn Screening Bootcamp in DC. Critical that SYNGAP1 is involved in NBS — find patients sooner. Thank you RARE Foundation. https://www.rareadvocates.org/newborn-screening-bootcamp/ - Vicky Arteaga + Allison Hirsch represented CURE SYNGAP1 at Rare Diseases International at the UN. https://www.linkedin.com/posts/rare-diseases-international_unga81-rarediseases-globalhealth-activity-7508918814357610496-xtZS WARRIORS - Wednesday Warrior #237: Matteo in NYC — happy 1st birthday! https://cureSYNGAP1.org/Warrior TAKE RESPIRATORY SERIOUSLY — JAXON IN ICU - Aaron Harding documented Jaxon’s ICU experience day-by-day. A difficult family experience worth reading directly. Add serrapeptase to your regime. - Aaron’s posts: https://www.facebook.com/aaron.j.harding.5 - Willsey paper: https://pmc.ncbi.nlm.nih.gov/articles/PMC11885846/ Another paper is coming soon. COMMUNITY IN ACTION - LATAM: One Voice for SYNGAP1 — VOCES! https://cureSYNGAP1.org/Voces - Auburn Delta Sigma Phi + Wyatt Jones: Delta Sig for SYNGAP1. https://cureSYNGAP1.org/auburn26 CURE SYNGAP1 CONFERENCE — DENVER - Dec. 3–4. Science Day: 156 registered. Family Day: 137, including 27 kids/Syngapians. - REGISTRATION ENDS OCT. 31. Hotel rooms going fast — register + book now. https://cureSYNGAP1.org/Reg26 PUBMED + SCIENCE - PubMed 2026: 54. +15 vs Week 39. Last year finished at 61, +9 vs the year. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date - NEW: Pekka Postila team — years of CURE SYNGAP1 support + partnership studying missense mutations. - Molecular modeling supports canonical RasGAP + Plexin-like RapGAP mechanisms; missense variants can disrupt protein stability AND catalysis; other insights. - Paper: https://doi.org/10.1016/j.yjsbx.2026.100162 USA: Use ICD-10 code F78.A1. SOCIAL MATTERS 5,288 LinkedIn. https://www.linkedin.com/company/cureSYNGAP1/ 1.62K YouTube. https://www.youtube.com/@CureSYNGAP1 11.1K X. https://twitter.com/cureSYNGAP1 43.7K Instagram. https://www.instagram.com/cureSYNGAP1/ Like + subscribe wherever you listen. https://cureSYNGAP1.org/podcasts/syngap10/ Episode 221 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy

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  Episode #221

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

  Sep 21, 202610 min

  Monday, September 21, 2026 — Week 39 CAMP4 ASCEND TRIAL — WEBINAR #131 CAMP4’s SYNGAP1 ASCEND Phase 1/2 Trial — What You Need To Know. Tuesday, Sept. 29 — 12 PM ET / 9 AM PT. REGISTER https://curesyngap1.org/calendar/webinar-131-camp4-syngap1-ascend-phase-1-2-trial/ SCRAMBLE FOR SYNGAP — 12 DAYS 5th Annual — Oct. 3, Greer, SC. Julie + family back on WSPA 7 News — including some very real family moments. SOLD OUT. Five years of building awareness + community. https://youtu.be/GcD58deUPtU Event: https://cureSYNGAP1.org/Scramble WARRIORS — KEEP TELLING THE STORIES NEW: Weston, 22 — diagnosed only 6 months ago. Late diagnosis! https://cureSYNGAP1.org/Warrior Will was Warrior #21 at age 9. He’s now 16. https://cureSYNGAP1.org/Will Kiera — Warrior #172 — now 6. https://cureSYNGAP1.org/Kiera These stories matter. Keep sharing them. COMBINEDBrain BIOBANK — ONLY 2 LOCATIONS LEFT Boston — Oct. 8–9. Denver — Dec. 3–4 at the CURE SYNGAP1 Conference. Email Lauren@cureSYNGAP1.org. HEOR — DOCUMENTING THE REAL BURDEN Building our Health Economics & Outcomes Research work with payers & clinicians in mind. Anxiety + behavior management matter. e.g. Rett: 323 caregivers — https://pubmed.ncbi.nlm.nih.gov/42570201/ e.g. Angelman: U.S. study of 105 caregivers estimated average annual caregiving economic impact at $79,837 — 53% from employment impacts/lost productivity. https://pubmed.ncbi.nlm.nih.gov/39985061/ HELP WANTED — PRESS We have a backlog of CURE SYNGAP1 press releases. Know PR / communications? We need help. Volunteer skills matter just as much as fundraising. IONIS — ANGELMAN Ionis published a community letter after the GTX-102/ASPIRE results. Relevant follow-up to my discussion in E217. Read it directly — 2’MOE https://assets.ctfassets.net/qj7dcdpo5rmb/nBQEr7TJQIyexzQu229Dl/a5ae4fff28861385532da0c8390b1c30/PA-US-AS-260005_-_Community_Statement_on_Status_of_Obudanersen_Program_-_FINAL_-_Sept_2026.pdf ULTRAGENYX — CONGRATULATIONS FDA FULL APPROVAL for FAYUVI / UX111 for Sanfilippo syndrome Type A. First-ever FDA-approved treatment for MPS IIIA. Single-dose IV AAV9 gene therapy. Second approved gene therapy for RARE. https://ir.ultragenyx.com/news-releases/news-release-details/ultragenyx-announces-approval-fayuvitm-gene-therapy-first-ever UPCOMING SHOOT FOR SYNGAP1 — Nov. 14, Hurricane, UT https://cureSYNGAP1.org/Shoot FIGHT FOR FELIPE — Nov. 28, Boston https://cureSYNGAP1.org/Fight CURE SYNGAP1 CONFERENCE — Dec. 3–4, Denver https://cureSYNGAP1.org/Reg26 PUBMED 50 SYNGAP1 publications in 2026 — +11 vs. Week 39. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date USA: Use your ICD-10, F78.A1 SOCIAL MATTERS 5,268 LinkedIn — +28 since E219. https://www.linkedin.com/company/curesyngap1 1.62k YouTube. https://www.youtube.com/@CureSYNGAP1 Like and subscribe wherever you listen. https://cureSYNGAP1.org/podcasts/syngap10 Episode 220 of #Syngap10 #RareDisease #CureSYNGAP1 #PatientAdvocacy

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  Episode #220

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

  Sep 11, 202610 min

  Friday, September 11, 2026 — Week 37 CAMP4 — ASCEND EXPANDS TO THE UK UK MHRA authorizes UK sites in CAMP4's Phase 1/2 CMP-002 trial. UK joins Australia + Argentina. EU filing remains under review. First-in-human trial still targeted to begin Q4 2026. Another major step toward our first disease-modifying clinical trial. https://investors.camp4tx.com/news-releases/news-release-details/camp4-therapeutics-receives-authorization-united-kingdom-phase CAMP4 ANALYST DAY — SEPT. 28 12–1:30 PM ET. Trial design + unmet need + early pipeline. CURE SYNGAP1 participating https://investors.camp4tx.com/news-events/events We will have a day after, webinar, stay tuned for details. USA TODAY — SYNGAP1 IN PRINT SYNGAP1 family story appeared in USA TODAY's national print edition this week. Families need education, care + support TODAY. https://www.usatoday.com/story/life/health-wellness/2026/09/01/kids-special-education-school-shortage-care/90851980007/ RARE-X + CITIZEN HEALTH Global Genes selects Citizen Health technology to power RARE-X. Important for us: ProMMiS uses Rare-X; CURE SYNGAP1 already works with Citizen. https://www.prnewswire.com/news-releases/global-genes-partners-with-citizen-health-to-power-rare-x-302870871.html SIX THINGS U.S. FAMILIES CAN DO Our Take Action page is LIVE. Don't just read it. Keep coming back until you've done all six. https://curesyngap1.org/TakeAction IEP HELP — CITIZEN HEALTH Oct. 4: IEP deep dive + Q&A with Staci Zimmerman, M.Ed. Register https://curesyngap1.org/calendar/what-nobody-tells-you-about-ieps-citizen-health-webinar/ RESEARCH — HELP WANTED 2-year SYNGAP1 postdoc — Sapienza University of Rome. Patient iPSCs, cortical neurons + brain organoids. Deadline Sept. 30. Know someone? Amplify it. https://www.sins.it/job_offer/postdoctoral-position-available-at-sapienza-university-of-rome/ COMMUNITY QUICK HITS NEW WARRIOR: Felipe, age 3. Parents Brian + Alana organizing Fight for Felipe. Want to fundraise? New support form: https://cureSYNGAP1.org/Fundraise Café SYNGAP1 #40 + #41: GRIN2A + GRIN2B communities. https://cureSYNGAP1.org/Cafe Night of Impact recap live. Time to start planning the next one. https://cureSYNGAP1.org/SF26Recap UPCOMING EVENTS — COUNTDOWN SHOOT FOR SYNGAP1 — 64 DAYS November 14 — Hurricane, Utah Aiming for a Cure — Shooting for Hope https://cureSYNGAP1.org/Shoot FIGHT FOR FELIPE — 78 DAYS November 28 — Boston, Massachusetts https://cureSYNGAP1.org/Fight CURE SYNGAP1 CONFERENCE — 83 DAYS December 3–4 — Denver, Colorado https://cureSYNGAP1.org/Reg26 USA : Use your ICD-10, F78.A1 SOCIAL MATTERS 5,240 LinkedIn — https://www.linkedin.com/company/curesyngap1 1.62k YouTube https://www.youtube.com/@CureSYNGAP1 43.7k Instagram https://www.instagram.com/curesyngap1 Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10 Episode 219 of #Syngap10 #SYNGAP1 #RareDisease #CureSYNGAP1 #PatientAdvocacy

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  Episode #219

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

  Sep 8, 202610 min

  Tuesday, September 8, 2026 — Week 37 DON’T MISS ASO UPDATE Episode 217 came out over the weekend. Don't miss it. There was lots of ASO news in there. https://www.linkedin.com/feed/update/urn:li:activity:7502544874399928322/ NATIONAL PRESS USA TODAY Special-needs care / education crisis — and a SYNGAP1 family featured. Diagnosis and future therapies aren't enough. Families need care, education and support today. https://www.linkedin.com/posts/bernadette-basilico-6924b29a_a-two-year-postdoctoral-position-with-share-7500493855591432192-sOD6/ https://www.usatoday.com/story/life/health-wellness/2026/09/01/kids-special-education-school-shortage-care/90851980007/ ADVOCACY UPDATE SYNCHRONY — PALO ALTO KAH + I attended the BRAIN Foundation's Synchrony symposium. The autism community is starting to wake up to neuroinflammation, and mental health psychiatrists are really working hard on this topic. There are also people looking more at the impact of diet. https://brainfoundation.org/synchrony-symposia/ ILAE #EEC2026 — ATHENS Virginie + Jaime + Vicky + Katrine representing SYNGAP1 at the 16th European Epilepsy Congress, Sept. 5–9. https://www.ilae.org/eec2026 Virginie’s Post: https://www.linkedin.com/posts/virginie-mcnamar_eec2026-ugcPost-7502600886368559105-LPbu/ THINGS YOU CAN DO RIGHT NOW GENEDX SURVEY How has getting a SYNGAP1 diagnosis improved your child's care? 5 minutes. Worth it. Please do it. https://curesyngap1.org/GDXsurvey ARI / CITIZEN HEALTH Sign up. Longitudinal medical records → research-ready data. This is clearly the future. https://citizen.health/ari/syngap1 SYNGO SYNGAP1 resource for families from LATAM, ask it to speak English! https://curesyngap1.org/syngo COMMUNITY GROWTH AND SUCCESS CURE SYNGAP1 PORTUGAL Congratulations to the Portuguese SYNGAP1 community — legal organization established + website live. Special applause for Henrique’s leadership. Another national organization building local advocacy and community. https://curegyngap1-portugal.org/en SCRAMBLE FOR SYNGAP — SOLD OUT Congratulations to the Scramble team — the 5th Annual Scramble for SYNGAP is SOLD OUT. 25 days to go. A great example of a community building momentum year after year. https://mailchi.mp/796f3e59d71b/the-scramble-for-syngap-is-sold-out?e=b5a3afc6ba UPCOMING EVENTS — COUNTDOWN SHOOT FOR SYNGAP1 — 67 DAYS November 14 — Hurricane, Utah Aiming for a Cure — Shooting for Hope https://cureSYNGAP1.org/Shoot FIGHT FOR FELIPE — 81 DAYS November 28 — Boston, Massachusetts https://cureSYNGAP1.org/Fight CURE SYNGAP1 CONFERENCE — 86 DAYS December 3–4 — Denver, Colorado https://cureSYNGAP1.org/Reg26 PUBMED 50 SYNGAP1 publications in 2026. +13 vs. Week 37. https://pubmed.ncbi.nlm.nih.gov/42692765/ Last year finished at 61 publications — +9 vs. the year. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date USA : Use your ICD-10, F78.A1 SOCIAL MATTERS 5,220 LinkedIn — https://www.linkedin.com/company/curesyngap1 1.61k YouTube https://www.youtube.com/@CureSYNGAP1 11.1k X https://x.com/cureSYNGAP1 43.7k Instagram https://www.instagram.com/curesyngap1 Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10 Episode 218 of #Syngap10 #SYNGAP1 #ASO #AngelmanSyndrome #AlexanderDisease #RareDisease #CureSYNGAP1 #PatientAdvocacy

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