Couverture de CURE SYNGAP1 PODCAST aka SYNGAP10

CURE SYNGAP1 PODCAST aka SYNGAP10

CURE SYNGAP1 PODCAST aka SYNGAP10

De : 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.
Economie Hygiène et vie saine Maladie et pathologies physiques Management Management et direction Science
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    Épisodes
    • Stoke Tx shows us that ASO Clinical Development is accelerating. #S10e196
      Jan 16 2026

      Friday, January 16, 2026 - Week 3

      Stoke Phase 3 Rapid Recruitment - A timeline that is ours to beat! https://investor.stoketherapeutics.com/news-releases/news-release-details/stoke-therapeutics-announces-updates-timelines-completion

      If Marcin can make it from Poland, you can make it from where you are! cureSYNGAP1.org/Marcin

      CAMP4 Website is great and features Dani Williams! https://www.camp4tx.com/

      Newsletter is out! https://cureSYNGAP1.org/NL49

      Sara Driscoll Genetic Testing Story - Share it or copy it! https://cureSYNGAP1.org/GenTest

      Pubmed 2026 is at 3! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date

      SOCIAL MATTERS 4,604 LinkedIn. https://www.linkedin.com/company/curesyngap1/ 1,510 YouTube. https://www.youtube.com/@CureSYNGAP1 11.2k Twitter https://twitter.com/cureSYNGAP1 45k Insta https://www.instagram.com/curesyngap1/

      $CAMP stock is at $5.78 on 15 Jan. ‘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 196 of #Syngap10 #CureSYNGAP1 #Podcast

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      10 min
    • SYNGAP1 Related Disorder (SRD) Key Talking Points & why we need to use them. #S10e195
      Jan 11 2026

      Saturday, January 10, 2026 - Week 2

      Here are key talking points to reference when talking about SRD. Please let us know your thoughts about how these could be better. https://docs.google.com/document/d/1lXaDQEVwF1K_yAU-RicaJibxb8xoJtldSvnVgopwu00/edit?usp=sharing

      SOCIAL MATTERS

      4,546 LinkedIn. https://www.linkedin.com/company/curesyngap1/

      1,500 YouTube. https://www.youtube.com/@CureSYNGAP1

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

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

      $CAMP stock is at $6.20 on 8 Jan. ‘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 195 of #Syngap10 #CureSYNGAP1 #Podcast

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      10 min
    • Becky Quick launches CNBC Cures, Finding Your Voice & Key Talking Points for SRD! #S10e194
      Jan 9 2026

      Friday, January 9, 2026 - Week 2

      Big news in SYNGAP-land, Becky Quick and Matt Quayle have a beautiful SynGAPian named Kaylie & they are launching CNBC Cures!

      - Wonderful to have more awareness of SYNGAP1, I hope it leads to more diagnoses.

      - My two favorite quotes from the episode and podcast: “There is no Mission without Money”-BQ & “She has reset our whole life plan…one day I’m going to be gone and is Kaylie going to be ok?”-MQ

      - Here is our page with all the links! https://www.linkedin.com/posts/curesyngap1_syngap1-curesyngap1-cnbccures-activity-7415094066675216387-32wF curesyngap1.org/kaylie

      It's important for us all to remember that it can take time to find our voice. And then use it.

      Speaking of using our voice, what can you say? We worked yesterday on Key Talking points which will live here and I will talk about them in the next episode. https://docs.google.com/document/d/1lXaDQEVwF1K_yAU-RicaJibxb8xoJtldSvnVgopwu00/edit?usp=sharing

      First paper of 2026, Challenges of Caregiving in SYNGAP1, STXBP1, and TSC.

      https://pubmed.ncbi.nlm.nih.gov/41405416/

      PUBMED is at 1 for the year. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2026&timeline=expanded&sort=date

      SOCIAL MATTERS

      4,546 LinkedIn. https://www.linkedin.com/company/curesyngap1/

      1,500 YouTube. https://www.youtube.com/@CureSYNGAP1

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

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

      $CAMP stock is at $6.20 on 8 Jan. ‘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 194 of #Syngap10 #CureSYNGAP1 #Podcast

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      10 min
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