SynGAP10 weekly 10 minute updates on SYNGAP1

By: Syngap Research Fund 501(c)(3)
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  • Summary

  • Over 1200 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This 10 minute 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 the SynGAP Research Fund. SRF is a parent-led, all volunteer 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://www.syngapresearchfund.org/
    Copyright 2021-3. Syngap Research Fund. All rights reserved.
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Biological Sciences Economics Hygiene & Healthy Living Management Physical Illness & Disease
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Episodes
  • Don’t give up on your SYNGAPian at any age, Go Aaron! and advocacy matters - #S10e160

    Don’t give up on your SYNGAPian at any age, Go Aaron! and advocacy matters - #S10e160
    Feb 4 2025
    Tuesday, February 4, 2025 - Week 6 CONVO - Parent of 18 year old Travel now.Get meds under control fastDon’t do this aloneDon’t give up on the adultsFind doctors who want to learn and think, not dictate. STUDIES OF THE WEEK - FRAZIER https://curesyngap1.org/resources/studies/tracking-thinking-skills-and-behaviors-in-syngap1-patients/ Don’t underestimate this tool, please take part in this study. Tracker page: https://docs.google.com/spreadsheets/d/1oQLNi85AUbISmcW0KbsgGn4cBK_4MNuvwGlKUUKLyIQ/edit?usp=sharing ADVOCACY SHOUT OUT https://www.linkedin.com/posts/sara-driscoll-mba-pe-ab904b49_rdla-syngap1-advocacymatters-activity-7290475540266831873-L2su/?utm_source=share&utm_medium=member_ios REGULATORY UPDATE - Feb 4 at 4PM EST. https://www.epilepsiesactionnetwork.org/post/calling-all-epilepsy-stakeholders-join-an-update-on-the-national-plan-for-epilepsy EF on EPILEPSY Instagram - Facebook - LinkedIn - X RESEARCH UPDATE There are 317 papers on or related to SYNGAP1 since 1998, but 54 of those are in 2024! So far 7 (but really 8 if you count Coller) for 2025. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2025&sort=pubdate&timeline=expanded James Clements paper is exciting: https://pubmed.ncbi.nlm.nih.gov/39878322/JC LinkedIn: https://www.linkedin.com/posts/james-clement-chelliah_epigenetic-modulation-rescues-neurodevelopmental-activity-7290365551879569409-X_6G/ VOLUNTEER SPOTLIGHT Aaron Harding is tireless Donate: https://giving.classy.org/campaign/661441/donate Video - https://youtu.be/7LprhkhyU5I CONFERENCE Pre-register now: December 4 & 5 – https://cureSYNGAP1.org/Pre25 VOLUNTEER Join us: https://curesyngap1.org/volunteer-with-srf/ SOCIAL MATTERS - 3,922 LinkedIn. https://www.linkedin.com/company/curesyngap1/ - 1,270 YouTube. https://www.youtube.com/@CureSYNGAP1 - 11,550 Twitter https://twitter.com/cureSYNGAP1 - 47k Insta https://www.instagram.com/curesyngap1/ NEWLY DIAGNOSED? New families have resources here! https://syngap.fund/Resources Podcasts, give all of these a five star review! https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917 Episode 160 of #Syngap10 #CureSYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1
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    14 mins
  • Study Spotlight: Rochester 3 Needs Toddlers, Minovacca's Neuro Focus, & Key Research Updates - #S10e159

    Study Spotlight: Rochester 3 Needs Toddlers, Minovacca's Neuro Focus, & Key Research Updates - #S10e159
    Jan 28 2025
    Tuesday, January 28, 2025 - Week 5 STUDIES OF THE WEEK - ROCHESTER 3 We need 3 more 0-2 Year olds. https://curesyngap1.org/resources/studies/neurodevelopmental-disorders-health-index-study-rochester-phase-3/ NYU - CureSYNGAP1.org/NYU https://curesyngap1.org/resources/studies/accuracy-of-smart-phone-identification-of-seizures-and-non-seizure-events-in-rare-genetic-epilepsies-nyu-langone-health/ Tracker page: https://docs.google.com/spreadsheets/d/1oQLNi85AUbISmcW0KbsgGn4cBK_4MNuvwGlKUUKLyIQ/edit?usp=sharing STUDY HUDDLE on THURSDAY! 1/30 noon ET - register cureSYNGAP1.org/StudyHuddle; main emphasis Rochester, Frazier, NYU COMPANY OF THE WEEK - Minovacca SRF put Neuro on their radar and now they are building a company. https://news.unl.edu/article/nebraska-based-startup-aims-to-improve-human-health-through-targeted-drug-delivery Press releases for Zempleni: https://curesyngap1.org/blog/syngap-research-fund-srf-continues-support-for-exosome-research-for-syngap1-related-disorders-srd-in-the-lab-of-professor-janos-zempleni-of-the-university-of-nebraska-lincoln-pr25/ REGISTER FOR BRAIN DONATION via https://www.autismbrainnet.org/ https://kevinmd.com/2025/01/how-postmortem-brain-research-is-changing-autism-science-podcast.html PATIENT ENGAGEMENT IMPROVES OUTCOMES https://globalgenes.org/report/announcing-early-and-often-reimagining-patient-community-engagement-to-improve-clinical-trials-feasibility/ RESEARCH UPDATE There are 315 papers on or related to SYNGAP1 since 1998, but 54 of those are in 2024! So far 4 (but really 5 if you count Coller) for 2025. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2025&sort=pubdate&timeline=expanded Huganir’s latest: https://pubmed.ncbi.nlm.nih.gov/39868300/Coller with the Poly-A is out: https://www.cell.com/molecular-therapy-family/nucleic-acids/fulltext/S2162-2531%2825%2900007-1Correction on China census paper, it was a review, we will not up the census. Note: Coller began working on SYNGAP1 with SRF support in 2022! See https://www.eurekalert.org/news-releases/966873 VOLUNTEER SPOTLIGHT Deanna N. Rorie nee Farley. Longest running SRF Volunteer ever. Big thanks for all the Warriors. CONFERENCE Pre-register now: December 4 & 5 – https://cureSYNGAP1.org/Pre25 VOLUNTEER Join us: https://curesyngap1.org/volunteer-with-srf/ SOCIAL MATTERS - 3,922 LinkedIn. https://www.linkedin.com/company/curesyngap1/ - 1,270 YouTube. https://www.youtube.com/@CureSYNGAP1 - 11,565 Twitter https://twitter.com/cureSYNGAP1 - 47k Insta https://www.instagram.com/curesyngap1/ NEWLY DIAGNOSED? New families have resources here! https://syngap.fund/Resources Podcasts, give all of these a five star review! https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917 Episode 159 of #Syngap10 #CureSYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1
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    14 mins
  • SRF Roadmap Paper is published. Read and share with family and supporters. - #S10e158 Wednesday, January 15, 2025

    SRF Roadmap Paper is published. Read and share with family and supporters. - #S10e158 Wednesday, January 15, 2025
    Jan 15 2025

    RESEARCH UPDATE

    There are 313 papers on or related to SYNGAP1 since 1998, but 54 of those are in 2024! So far 2 for 2025.

    https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2025&sort=pubdate&timeline=expanded

    Census = 1,530! https://cureSYNGAP1.org/Census, China was only 113, but now they are 246!

    Check out these social posts on our https://cureSYNGAP1.org/SRFPaper

    • https://www.linkedin.com/posts/curesyngap1_syngapresearchfund-syngap1-curesyngap1-activity-7285038902300569602-XTGJ
    • https://x.com/cureSYNGAP1/status/1879272983077781804
    • https://fb.watch/x6KdWuLSA8/

    STUDIES AND TRIALS ARE HAPPENING NOW https://docs.google.com/spreadsheets/d/1oQLNi85AUbISmcW0KbsgGn4cBK_4MNuvwGlKUUKLyIQ/

    FUNDRAISING

    • Coast2Coast Challenge $359,280 Syngap.Fund/C2C
    • FUNDRAISE https://syngap.fund/FR
    • #Sprint4Syngap is launching… https://secure.givelively.org/donate/syngap-research-fund-incorporated/sprint4syngap-2025

    VOLUNTEER SPOTLIGHT

    Sara Driscoll - https://curesyngap1.org/team/volunteers/sara-driscoll/

    CONFERENCE

    Pre-register now: December 4 & 5 – https://cureSYNGAP1.org/Pre25

    VOLUNTEER

    Join us: https://curesyngap1.org/volunteer-with-srf/

    SOCIAL MATTERS

    - 1,260 YouTube. https://www.youtube.com/@CureSYNGAP1

    - 3,906 LinkedIn. https://www.linkedin.com/company/curesyngap1/

    - 11,670 Twitter https://twitter.com/cureSYNGAP1

    - 47k Insta https://www.instagram.com/curesyngap1/

    - 464 TikTok https://www.tiktok.com/@curesyngap1

    NEWLY DIAGNOSED?

    New families have resources here! https://syngap.fund/Resources

    Podcasts, give all of these a five star review!

    https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917

    Episode 158 of #Syngap10

    #CureSYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1
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    12 mins

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