Free Daily Podcast Summary
CURE SYNGAP1 PODCAST aka SYNGAP10: Daily Summaries Delivered
by 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.
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- 1 weeks ago13 min
Travel! CAMP4 EU + Stoke Mention #SYNGAP1, Guanfacine, Sleep EEG & Record Conf #S10E225
Friday, November 6, 2026 — Week 45 CURE SYNGAP1 ON THE ROAD I spoke at the SYNGAP1 UK Family Conference; Kathryn + I then met Peter Kind’s team at SIDB / Patrick Wild Centre in Edinburgh. https://curesyngap1.org/calendar/syngap1-uk-2026-family-conference | https://sidb.org.uk | https://patrickwildcentre.com Kathryn joined Virginie at FAST in Orlando. https://cureangelman.org/summit Suzanne represented us at COMBINEDBrain in Nashville. https://www.combinedbrain.org/event-6741756 Two weeks ago Suzanne + I were at BIO PACE in D.C. https://pace.bio.org Four of us representing CURE SYNGAP1 US across science, advocacy + rare-disease collaboration. INDUSTRY PIPELINE - https://curesyngap1.org/pipeline CAMP4 Q3: ASCEND launched; EU, UK, Australia + Argentina cleared; first CMP-002 patient expected by year-end. Stoke Q3: lead optimization underway for a SYNGAP1 candidate; Acadia collaboration active. Praxis Q3 due Nov. 9 — watching PRAX-090. GondolaBio: private; SYNGAP1 listed, previously in lead optimization. PAPER! GUANFACINE SYNGAP1 mice showed excess noradrenergic arousal; guanfacine reduced it and restored visual cortical coding precision. https://cureSYNGAP1.org/Guanfacine PAPER! SLEEP / EEG — BEACON Home dry EEG: 30 enrolled; 23 had >1 hour usable data; interictal discharges in 22/23; sleep efficiency/stages altered. Preprint. https://www.linkedin.com/posts/characterization-of-sleep-spectral-and-share-7523368556156178433-MB9a DENVER IN 27 DAYS! 255 Science Day; 206 Family Day incl. 36 kids/Syngapians. Record turnout. Late registration: email Lauren for the link. Deadline Nov. 16. Thursday Rare Reception: https://cureSYNGAP1.org/RR26 Friday dinner: 33 seats left. https://cureSYNGAP1.org/Henrys REPURPOSED DRUGS Nortriptyline & NALL trial discussions continue. Corey Baysden: repurposed drug → life-changing benefit → Ravicti coverage. https://www.facebook.com/photo/?fbid=10164868478874280&set=a.10150174820609280 COMMUNITY Ryker #103, now 15: https://cureSYNGAP1.org/Ryker Naya, now 9: https://cureSYNGAP1.org/Naya Warrior #239 Kai, Spain: https://cureSYNGAP1.org/Warrior Lee & Zimmy volleyball raised $15K: https://www.leeandzimmyclassic.com/ PROMMIS - https://curesyngap1.org/prommis/ ENDD newsletter: https://curesyngap1.org/blog/endd-connections-issue-1-fall-2026/ Not in yet? Sign up ASAP at CHOP or Stanford. PUBMED + SCIENCE PubMed 2026: 61 — +16 vs Wk45; tied with full-year 2025. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&timeline=expanded USA — ICD-10: F78.A1 SOCIAL MATTERS LinkedIn 5,385: https://linkedin.com/company/curesyngap1 YouTube 1.64K: https://youtube.com/@CureSYNGAP1?sub_confirmation=1 Instagram: 43k https://instagram.com/curesyngap1 Like + subscribe https://cureSYNGAP1.org/podcasts/syngap10 Episode 225 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy
- 2 weeks ago9 min
5 days left to register for the conf, #Pipeline, #ProMMiS Protocol, #ORCA Webinar & more #S10e224
Monday, October 26, 2026 — Week 44 DENVER — 5 DAYS TO REGISTER Science Day 224. Family Day 180, including 33 kids/Syngapians. Family Dinner 57 seats. Registration closes OCT. 31. Register: https://cureSYNGAP1.org/Reg26 Dinner: https://cureSYNGAP1.org/Henrys Rare Reception: https://cureSYNGAP1.org/RR26 — thank you BioMarin, Lundbeck + Citizen Health. NEW PIPELINE + COLLABORATION Updated SYNGAP1 therapeutic pipeline: https://cureSYNGAP1.org/pipeline RAD video — broad collaboration is how rare diseases get treated. https://www.linkedin.com/posts/caleb-moore-4382704_many-terrible-diseases-will-find-treatments-ugcPost-7518359681396989952-8-XH Nordli: Referral + Citizen data + COMBINEDBrain connections. He will speak at the conference. PROMMIS@cureSYNGAP1.org “A prospective natural history study protocol for clinical trial readiness in synaptic disorders.” ProMMiS: 159 people with SYNGAP1-RD enrolled. https://doi.org/10.1002/epi.70374 Sign up now at Philadelphia or Stanford. STUDIES + WEBINARS DAY-C at CHOP: ages 9–18, especially families unable to do ProMMiS due to travel/behavior. ENDD@chop.edu ORCA Webinar #134 with Abby Rader — Nov. 10, 10:30 AM PT / 1:30 PM ET. https://cureSYNGAP1.org/Abby ASCEND Webinar #131 now dubbed in 8 languages 🇩🇪🇪🇸🇫🇷🇮🇹🇳🇱🇵🇱🇵🇹 https://curesyngap1.org/calendar/webinar-131-camp4-syngap1-ascend-phase-1-2-trial/ BIOPACE, ACCESS + PRACTICAL HELP #BIOPACE26 posts: SJ https://lnkd.in/p/giMZkm2c (Thx for going to CB Annual Summit in Nashville, next!) https://www.linkedin.com/posts/graglia_syngap1-biopace26-curesyngap1-activity-7519425517163569152-Q6tF REN + Epilepsy Foundation genetic testing roundtable: https://lnkd.in/p/gq8gf_6s Triage Health FREE online conference Nov. 6–7 — insurance, appeals, finances, disability, work + planning. https://triagehealth.org/flyer-conference-november HEOR / REACH Economic + Humanistic Burden Study with Global Genes, Kielo Research + Citizen Health. Family input now → survey early 2027. https://cureSYNGAP1.org/PR51 TRANSPARENCY Five years of audited financials: https://curesyngap1.org/finances/ PUBMED YTD: 59. +15 vs Week 44. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1 SOCIAL MATTERS 5.35k LinkedIn https://www.linkedin.com/company/cureSYNGAP1 1.64k YouTube https://www.youtube.com/@CureSYNGAP1 11k X https://x.com/cureSYNGAP1 43k Insta https://www.instagram.com/cureSYNGAP1/ Like + subscribe https://cureSYNGAP1.org/podcasts/syngap10 Episode 224 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy
- 3 weeks ago9 min
What You Need to Know & When: DAY-C, UNLOCK, Ari, ORCA, HEOR, Denver (11 days to register) #S10E223
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
- Oct 2, 20269 min
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
- Sep 26, 20269 min
CAMP4 ASCEND Webinar + #SYNGAP1 Goes Global: Argentina, UN, Newborn Screening & Jaxon in ICU #S10E221
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
- Sep 21, 20269 min
ASCEND Trial Webinar + #SYNGAP1 Warriors, Biobank, HEOR & Industry News #S10E220
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 Yo
- Sep 11, 20269 min
UK MHRA Approves CAMP4 ASCEND + USA Today + Rare-X/Citizen Health + 6 Things #S10E219
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://cur
- Sep 8, 20269 min
USA Today, Synchrony Conf, #EEC2026, Portugal & Family Resources — #CureSYNGAP1 in Action #S10E218
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 <a href
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About CURE SYNGAP1 PODCAST aka SYNGAP10
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.
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Frequently Asked Questions
What is Podzilla's CURE SYNGAP1 PODCAST aka SYNGAP10 daily summary?
It's a free AI-powered email that summarizes new episodes of CURE SYNGAP1 PODCAST aka SYNGAP10 as soon as they're published. You get the key takeaways, notable quotes, and links & mentions — all in a quick read.
How does the CURE SYNGAP1 PODCAST aka SYNGAP10 podcast summary work?
When a new episode drops, our AI transcribes and analyzes it, then generates a personalized summary tailored to your interests and profession. It's delivered to your inbox every morning.
Is this an official CURE SYNGAP1 PODCAST aka SYNGAP10 product?
No. Podzilla is an independent service that summarizes publicly available podcast content. We're not affiliated with or endorsed by Syngap Research Fund, 501(c)(3).
Can I get summaries of other podcasts too?
Absolutely! The free plan covers up to 3 podcasts, any in the catalog. Basic raises that to 15, Pro to 40 and Max to 100. Browse our full catalog at /podcasts.
How often does CURE SYNGAP1 PODCAST aka SYNGAP10 release new episodes?
CURE SYNGAP1 PODCAST aka SYNGAP10 publishes weekly. Our AI generates a summary within hours of each new episode.
What topics does CURE SYNGAP1 PODCAST aka SYNGAP10 cover?
CURE SYNGAP1 PODCAST aka SYNGAP10 covers topics including Science, Business, Medicine, Fitness, Health & Fitness, Life Sciences, Non-Profit. Our AI identifies the specific themes in each episode and highlights what matters most to you.
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