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SynGAP10 weekly 10 minute updates on SYNGAP1Author: Syngap Research Fund, 501(c)(3)
Over 1,600 families are caring for a loved one with the rare disease SynGAP resulting from a variant of the SYNGAP1 gene. This weekly podcast is for them. -A quick summary of the latest news in the space. The host is Mike Graglia, co-founder & managing director of CURE SYNGAP1. CURE SYNGAP1 is a parent-led public charity in the US that strives to accelerate research into treatments for SYNGAP1 so that we can help our loved ones in a timeframe that matters. Learn more at https://cureSYNGAP1.org Language: en Genres: Business, Health & Fitness, Medicine, Non-Profit Contact email: Get it Feed URL: Get it iTunes ID: Get it |
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What You Need to Know & When: DAY-C, UNLOCK, Ari, ORCA, HEOR, Denver (11 days to register) #S10E223
Episode 224
Tuesday, 20 October, 2026
Tuesday, October 20, 2026 — Week 43 WHAT YOU CAN DO RIGHT NOW DAY-C remote developmental study — ages 9–25. Especially important for families who cannot participate in ProMMiS because travel/behavior makes in-person testing hard. ENDD@chop.edu https://curesyngap1.org/blog/validating-remote-developmental-assessments-syngap1-related-disorders-grant-awarded-julie-orlando-center-for-epilepsy-and-neurodevelopmental-disorders-u-penn-jill-mckee-childrens-hospital-philadelphia/ KNOW YOUR MUTATION. Join Citizen, ask Citizen; get Ari, ask Ari. ~70 families already using Ari. https://cureSYNGAP1.org/Ari COMBIOMICS — if Isaac or Grace from COMBINEDBrain emails you, respond. Very important study. RAISE FUNDS VIA UNLOCK $200,000 matching gift! https://curesyngap1.org/calendar/unlock-their-tomorrow-2026-syngap1 COMING SOON — ORCA ORCA validation recruitment is coming. This is the most important survey to complete in Q4 if you want to help change the future. TRAVEL Suzanne, Eric and I are off to BIO this week on Th/F. Next week Kathryn and I will be at the UK Conference followed by Edinburgh meetings. Kathryn will travel on to FAST where she and Virginie will partner and learn. DENVER — REGISTER NOW Science Day: 204. Family Day: 168, including 32 kids/Syngapians. Registration closes OCT. 31. https://cureSYNGAP1.org/Reg26 Rare Reception: https://cureSYNGAP1.org/RR26 Family Dinner: 41 registered. https://cureSYNGAP1.org/Henrys AT THE CONFERENCE → EARLY 2027 — HEOR HEOR kickoff happened. Family focus groups Thursday + Friday at the conference. Survey comes early 2027. This is patient-led research we need families to complete — data for payers, clinicians, behavior/anxiety burden and future access to treatment. https://www.eurekalert.org/news-releases/1148569 WHAT WE’VE BEEN UP TO Milken Institute Patient Advocacy Forum — “If it’s done right, it’s not done alone.” UT-Arlington — partnership discussions around how SYNGAP1 can be part of ambitious new work. Phoenix Children’s + COMBINEDBrain — Kathryn: partnership poised to “level up multidisciplinary care and clinical trial capacity.” Families + COMBINEDBrain helping bring patient expertise into trial planning. https://www.linkedin.com/posts/kathryn-syngap-research-fund_a-huge-thank-you-from-all-pediatric-rare-ugcPost-7515853296868229120-d0VM Theme: strategic collaboration — more institutions, more partners, more people doing the work. SYNGAP1 AL DÍA New Spanish-language S10-style podcast hosted by Fernanda + Carlos Caparros of CURE SYNGAP1 LATAM. https://cureSYNGAP1.org/ALDia SOCIAL MATTERS 5,333 LinkedIn. https://www.linkedin.com/company/cureSYNGAP1 1.63k YouTube. https://www.youtube.com/@CureSYNGAP1 Like + subscribe https://cureSYNGAP1.org/podcasts/syngap10 Episode 223 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy
