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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About this listen

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
  • #RareDiseaseWeek! We are doing much beyond grants… too much. Get the Citizen Health App! #S10e200

    #RareDiseaseWeek! We are doing much beyond grants… too much. Get the Citizen Health App! #S10e200
    Feb 25 2026

    Wednesday, February 25, 2026 - Week 9

    Thank you Virginie, Eric & Paulina for being in Cold DC right now with the Everylife Foundation! https://www.linkedin.com/posts/curesyngap1_raredc2026-syngap1-curesyngap1-activity-7432425642295586816-IVDQ

    NATURAL HISTORY STUDY

    Sign up for Citizen Health cureSYNGAP1.org/Citizen and ProMMiS cureSYNGAP1.org/ProMMiS

    And now the Citizen Health App on iOS https://www.linkedin.com/posts/graglia_your-advocate-is-now-with-you-in-every-moment-activity-7432260543748579328--dva

    Board meeting… key message, we are much more than fundraising, grants and patient support. Here is our list of non-grant projects.

    1. Fundraising
    2. Regulatory - Industry
    3. Regulatory - FDA
    4. Clinical Trial Readiness
    5. Standard of Care
    6. Patient Engagement
    7. Health Economics https://www.linkedin.com/posts/graglia_the-economic-impact-of-caregiving-for-individuals-activity-7431827551574011904-HvA4
    8. Global Coordination
    9. Next steps with NALL
    10. Patient Support
    11. Next steps with Nortriptyline

    BIOSAMPLES & EEGs!

    Biorepository needs more samples. Check out the list and map here https://combinedbrain.org/roadshow/ and contribute both blood & EEGs. The data and research we do with these samples is invaluable. Let us know if you are going, email our CSO@curesyngap1.org

    FUNDRAISING - SPRINT4SYNGAP

    Sprint is April 25 - our calendar page - cureSYNGAP1.org/Sprint - has all the information in the following links:

    Also, May 28, San Francisco, CA: cureSYNGAP1.org/SF26

    Scramble for Syngap - 5th annual on October 3 in S. Carolina cureSYNGAP1.org/Scramble26

    PUBMED

    Pubmed 2026 is at 9, just like last week but am I seeing some amazing manuscripts! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date (Remember we had 18 in all of ‘18)

    SOCIAL MATTERS

    4,700 LinkedIn. https://www.linkedin.com/company/curesyngap1

    1,530 YouTube. https://www.youtube.com/@CureSYNGAP1

    11.2k Twitter https://twitter.com/cureSYNGAP1

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

    $CAMP stock is at $4.70 on 24 Feb. ‘26 https://www.google.com/finance/beta/quote/CAMP:NASDAQ

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

    Episode 200 of #Syngap10 #CureSYNGAP1 #Podcast
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    10 mins
  • Support Clinical Trial Design for #SYNGAP1 via biobanks, EEGs and Fundraising. #S10e199

    Support Clinical Trial Design for #SYNGAP1 via biobanks, EEGs and Fundraising. #S10e199
    Feb 17 2026
    Tuesday, February 17, 2026 - Week 8 We are flat out, thank you to the team who work full-time on SYNGAP1: VM KAH LP PP & KF. CLINICAL TRIAL DESIGN We are Angelman-like. (Rett also) https://aesnet.org/abstractslisting/differentiating-key-symptoms-of-angelman-syndrome-as-and-syngap1-via-caregiver-reported-and-us-claims-data-to-understand-differences-between-how-providers-and-caregivers-view-impacts-on-patient-care Dravet or Angelman? Phase 1/2 is when we try it all. EEGs and NHS help with this effort. BIOSAMPLES & EEGs! Biorepository needs more samples. Check out the list and map here https://combinedbrain.org/roadshow/ and contribute both blood & EEGs. The data and research we do with these samples is invaluable. Let us know if you are going, email our CSO@curesyngap1.org. (Stay tuned for another exciting device study…) NATURAL HISTORY STUDY Sign up for Citizen Health cureSYNGAP1.org/Citizen and ProMMiS cureSYNGAP1.org/ProMMiS NHS Survey in English: https://curesyngap1.org/SurveyProMMiS & Spanish: https://curesyngap1.org/encuestaProMMiS Latest Pod on NHS: https://youtu.be/7W38uWKBIAw?si=lCrffwMXidmYWz7t FUNDRAISING - SPRINT4SYNGAP Sprint is April 25 - our calendar page - cureSYNGAP1.org/Sprint - has all the information in the following links: set up your team - cureSYNGAP1.org/Sprint26 resource guide for your event - cureSYNGAP1.org/S4SGuide webinar #99 to help get you started - cureSYNGAP1.org/S4S25 Also, May 28, San Francisco, CA: cureSYNGAP1.org/SF26 Scramble for Syngap - 5th annual on October 3 in S. Carolina cureSYNGAP1.org/Scramble26 PUBMED Pubmed 2026 is at 9! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date (Remember we had 18 in all of ‘18) Cool connection to #PraderWilli Syndrome. https://www.linkedin.com/posts/graglia_syngap1-praderwilli-autism-share-7429579885985296385-zuIH ETC - More warriors cureSYNGAP1.org/Warrior - Dr. Donlin-Asp Press Release cureSYNGAP1.org/PR42 see talk here https://www.youtube.com/watch?v=lR8qcZK-9ro - Bravo Sara Driscol and GeneDx https://www.linkedin.com/posts/genedx_beyondawareforrare-ugcPost-7427763511235248129-QPPL?utm_source=share&utm_medium=member_desktop&rcm=ACoAAAAD8f4B7JC4TMss45Q8hrsq5kiceI0Z8HE SOCIAL MATTERS 4,686 LinkedIn. https://www.linkedin.com/company/curesyngap1 1,520 YouTube. https://www.youtube.com/@CureSYNGAP1 11.2k Twitter https://twitter.com/cureSYNGAP1 45k Insta https://www.instagram.com/curesyngap1 $CAMP stock is at $3.85 on 17 Feb. ‘26 https://www.google.com/finance/beta/quote/CAMP:NASDAQ Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10/ Episode 199 of #Syngap10 #CureSYNGAP1 #Podcast
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    10 mins
  • All #SYNGAP1 Families need to take part in our Natural History Studies: ProMMiS & Citizen #S10e198

    All #SYNGAP1 Families need to take part in our Natural History Studies: ProMMiS & Citizen #S10e198
    Feb 6 2026

    Thursday, February 5, 2026 - Week 6

    Happy #RareDisease & #BlackHistory Month!

    #NaturalHistory means how this disease progresses. Reminder: We have only been at this for 17 years, first patients were identified via Hamdan, 2009. https://pubmed.ncbi.nlm.nih.gov/19196676/

    Retrospective Digital NHS: cureSYNGAP1.org/Citizen (Growing list of tools available to families, for free)

    Prospective Multi-disciplinary Multi-site NHS: ProMMiS cureSYNGAP1.org/ProMMiS

    Reminder, only possible by CS1 support for non-CHOP sites and travel plus huge gift to Penn. https://www.chop.edu/news/25-million-gift-penn-medicine-and-children-s-hospital-philadelphia-establishes-center-epilepsy

    Potential for being a control arm in the future.

    Protocol: https://www.linkedin.com/posts/curesyngap1_syngap1-stxbp1-dee-activity-7425223573134327808-SVEQ & early data: https://pubmed.ncbi.nlm.nih.gov/40119723/

    Join the ~160 families who have enjoyed excellent clinical care and contributed tot he future of SYNGAP1. Today, a 4 month old is going!

    CHOP: 119 new, V2- 67, V3- 32, V4- 10, V5- 4

    CHCO: 37 new, V2- 7

    Stanford: 8 new, V2- 2

    Total: 164 (double counting one family who goes to multiple sites)

    Survey

    English: https://curesyngap1.org/SurveyProMMiS Spanish: https://curesyngap1.org/encuestaProMMiS

    94 Responses to survey, so far:

    Why not? Did not receive an invitation, Too far to travel, Too expensive

    Barriers: Logistics, Cost, Time off, Behaviors, Insurance

    ETC.

    Pubmed 2026 is at 6! But will soon be 7 with the McKee paper!

    https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date

    Biorepository needs more samples. Check out the list and map here https://docs.google.com/presentation/d/1IjaHILXj7AlBDlbTJgvYrkBS_0bnI8VCnTIiPXJ7JGM/edit?usp=sharing and contribute blood. The data and research we do with these samples is invaluable.

    May 28, San Francisco, CA: cureSYNGAP1.org/SF26

    SOCIAL MATTERS

    4,668 LinkedIn. https://www.linkedin.com/company/curesyngap1/

    1,520 YouTube. https://www.youtube.com/@CureSYNGAP1

    11.2k Twitter https://twitter.com/cureSYNGAP1

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

    $CAMP stock is at $3.59 on 5 Feb. ‘26 https://www.google.com/finance/beta/quote/CAMP:NASDAQ

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

    Episode 198 of #Syngap10 #CureSYNGAP1 #Podcast
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    10 mins
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