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CURE SYNGAP1 PODCAST aka SYNGAP10 cover art

CURE SYNGAP1 PODCAST aka SYNGAP10

CURE SYNGAP1 PODCAST aka SYNGAP10

Written by: Syngap Research Fund 501(c)(3)
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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

Copyright 2021-5. CURE SYNGAP1. All rights reserved. Biological Sciences Economics Hygiene & Healthy Living Management Management & Leadership Physical Illness & Disease Science
Episodes
  • #ILoveSomeoneWithSYNGAP1. June 21 is SYNGAP1 Awareness day. $159 rooms at the GrandHyatt! #S10e210

    #ILoveSomeoneWithSYNGAP1. June 21 is SYNGAP1 Awareness day. $159 rooms at the GrandHyatt! #S10e210
    Jun 20 2026
    Friday, June 19, 2026 - Week 25 June 21 is SYNGAP1 Awareness Day, but we have made it SYNGAP1 Awareness month! Why 6/21? Because 6p21.32 Donate! cureSYNGAP1.org/Donate #ThisIsOursToLose & #BurdenHopeProgress watch #S10e208 https://curesyngap1.org/podcasts/syngap10/tony-update-thisisourstolose-more-great-results-from-camp4-nightofimpact-in-9-days-s10e208/ New family email, very good, lots of questions. It’s all here. Reach out, we are here for you and you are welcome in this community – you are part of it whether you like it or not. Raise money. Join our host committee for 2nd SF event next year.Believe that we are doing the best we possibly can, and you would be adrift without a PAG. If you think this is painful, imagine if we weren't here!Register for the Conference. Book tickets to DEN now. cureSYNGAP1.org/DenverJoin us -- make this org better for all of us and all our kids for all their lives. Complex work doesn't fit neatly in 10 minutes anymore... Health Economics and Market Access work is going well, we will put out an RFP shortly. NATURAL HISTORY Goes On! Make sure you are in it. https://curesyngap1.org/resources/studies/syngap1-prommis/ Orlando/McKee Grant "Validating Remote Developmental Assessments in SYNGAP1-Related Disorders" cureSYNGAP1.org/PR49 🤖 ARI Sign up now, s/he keeps getting better, and then connect to Citizen Health, if you are not on Citizen Health, fix that. https://www.citizen.health/ai-advocate/syngap1 https://ari.citizenhealth.com/ KUDOS - The fifth MDBR, Justin Albrecht rode 70 remote in NC. Raised $2k. - Rachel Jasiczek (Yah-she-check) was a guest on Remarkable Futures Podcast - https://open.spotify.com/episode/7dYmHcXEu58H4C8VCoZ9V1?si=x3xvui86TY2cyGHyS3mGDQ - Collective: CURE SYNGAP1 Collective - cureSYNGAP1.org/PR48 Collective page - cureSYNGAP1.org/Collective More fundraisers! WARD - Shoot for SYNGAP on November 14th in Utah! https://fb.watch/HRnwf9FnEB/ Another in Boston in the works… WEBINAR: Understanding ASOs & Informed Consent June 30 4:30 ET https://curesyngap1.org/calendar/understanding-asos-informed-consent/ 5TH SCRAMBLE FOR SYNGAP, SC – 106 days till October 3rd Classic case of a small event becoming an institution! cureSYNGAP1.org/Scramble26 CURE SYNGAP1 CONFERENCE - 166 days until December 3rd cureSYNGAP1.org/Denver rooms available: ‭cureSYNGAP1.org/denhyatt for $159. In on Wed, out on Saturday. USA: use your ICD-10, F78.A1: https://onlinelibrary.wiley.com/doi/10.1002/epi.70142 PUBMED Pubmed 2026 is at 37. +12 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date SOCIAL MATTERS 5,058 LinkedIn. https://www.linkedin.com/company/curesyngap1 1.58k YouTube. https://www.youtube.com/@CureSYNGAP1 11.1k Twitter https://twitter.com/cureSYNGAP1 45k Insta https://www.instagram.com/curesyngap1 $CAMP closed at $4.13 yesterday. https://www.google.com/finance/beta/quote/CAMP:NASDAQ Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10 Episode 210 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy
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    10 mins
  • #NightOfImpact a huge success & we are lucky to have Dr. Helen R Willsey. #S10e209

    #NightOfImpact a huge success & we are lucky to have Dr. Helen R Willsey. #S10e209
    Jun 11 2026

    Wednesday, June 10, 2026 - Week 24

    #NightOfImpact was 15 Days ago!

    Photos: https://jeaniehorton.pixieset.com/curesyngap1nightofimpact2026/

    Impact: $800k+, of which $300 was our match.

    Industry: Multiple

    Academics & Clinicians: Stanford, Berkeley & UCSF. Cross-pollination is always good.

    Speakers: Ash, John, Kathryn, Helen Willsey & Me. Only got a video of John, which was a mistake. If you took one, please share. Here is John: https://www.linkedin.com/posts/graglia_still-reflecting-on-our-inaugural-cure-syngap1-ugcPost-7467439971294048256-cUf9/

    Dr. Willsey Rocks.

    Willsey Press Release https://www.eurekalert.org/news-releases/1130924 (both were at NoI).

    A few other points on HRW, as we call her. Simons: https://curesyngap1.org/blog/future-research-for-syngap1-how-helen-willsey-broke-new-ground-frogs-in-hand/

    Willsey in Neuron 2021: https://www.cell.com/neuron/pdf/S0896-6273(21)00002-7.pdf (Frogs)

    Birtele in Nature Neuroscience 2023: https://www.nature.com/articles/s41593-023-01477-3 (Confirms)

    McCluskey in Nature Communications 2025: https://www.nature.com/articles/s41467-025-57342-3 (GI) Kostyanovskaya in BioRxiv 2025: https://pubmed.ncbi.nlm.nih.gov/39677731 (cilium)

    5TH SCRAMBLE FOR SYNGAP, SC – 114 days

    Classic case of a small event becoming an institution!

    cureSYNGAP1.org/Scramble26

    CURE SYNGAP1 CONFERENCE - 175 days

    cureSYNGAP1.org/Pre

    USA: use your ICD-10, F78.A1: https://onlinelibrary.wiley.com/doi/10.1002/epi.70142

    PUBMED

    Pubmed 2026 is at 35. +11 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date

    SOCIAL MATTERS

    5,045 LinkedIn. https://www.linkedin.com/company/curesyngap1

    1.58k YouTube. https://www.youtube.com/@CureSYNGAP1

    11.1k Twitter https://twitter.com/cureSYNGAP1

    45k Insta https://www.instagram.com/curesyngap1

    $CAMP closed at $4.34 today.

    https://www.google.com/finance/beta/quote/CAMP:NASDAQ

    Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10

    Episode 209 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy
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    10 mins
  • Tony update. #ThisIsOursToLose. More great results from $CAMP4. #NightOfImpact in 9 days! #S10e208

    Tony update. #ThisIsOursToLose. More great results from $CAMP4. #NightOfImpact in 9 days! #S10e208
    May 19 2026

    Tuesday, May 19, 2026 - Week 21

    Personal Update via Syngap Stories:

    Page: cureSYNGAP1.org/stories41

    Post: https://www.linkedin.com/posts/syngap1stories-syngap1-curesyngap1-share-7462125026276777984-OVBr

    #ThisIsOursToLose - Three steps to engaging friends with CURE SYNGAP1.

    1. Share CURE SYNGAP1 Video - Burden, Hope & Progress - 1.1k views in 11 days.

    cureSYNGAP1.org/Burden https://www.linkedin.com/posts/syngap1-curesyngap1-raredisease-share-7458298251893448706-jfWF

    1. Send IMPACT REPORT - Tool for family, newly diagnosed & Fundraising.

    cureSYNGAP1.org/Impact or cureSYNGAP1.org/Impact25

    1. Ask to Donate

    curesyngap1.org/donate/

    CAMP4

    Joining us at the Night of Impact (with Stoke, Acadia, BioMarin, Gondola & others) and…

    https://www.biospace.com/press-releases/camp4-therapeutics-to-present-new-preclinical-data-demonstrating-cmp-002-improves-seizure-threshold-and-severity-in-a-model-of-syngap1-related-disorder

    INAUGURAL SF NIGHT OF IMPACT, CA – 9 days

    Join us this is our only Gala for 2026!

    cureSYNGAP1.org/SF26

    5TH SCRAMBLE FOR SYNGAP, SC – 137 days

    Classic case of a small event becoming an institution!

    cureSYNGAP1.org/Scramble26

    CURE SYNGAP1 CONFERENCE - 198 days.

    cureSYNGAP1.org/Pre26

    USA: use your ICD-10, F78.A1: https://onlinelibrary.wiley.com/doi/10.1002/epi.70142

    PUBMED

    Pubmed 2026 is at 31. +10 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date

    SOCIAL MATTERS

    4,964 LinkedIn. https://www.linkedin.com/company/curesyngap1

    1.58k YouTube. https://www.youtube.com/@CureSYNGAP1

    11.1k Twitter https://twitter.com/cureSYNGAP1

    45k Insta https://www.instagram.com/curesyngap1

    $CAMP closed at $4.56 yesterday.

    https://www.google.com/finance/beta/quote/CAMP:NASDAQ

    Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10

    Episode 208 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy
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    10 mins
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