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10 Reasons SYNGAP-land is hopeful & exciting today #S10e92
Episode 92

10 Reasons SYNGAP-land is hopeful & exciting today #S10e92

CURE SYNGAP1 PODCAST aka SYNGAP10

February 8, 202315m 58s

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Show Notes

  1. Last week RegEl announced that their CNS Pipeline: Dravet, SCN2A & SYNGAP1 
    1. News https://twitter.com/cureSYNGAP1/status/1621293977579442177
    2. Follow her https://twitter.com/navneetkmatharu
    3. And him https://www.linkedin.com/in/jordane-dimidschstein-a1114852 
  2. Yesterday, Penn announced a $25m grant to the ENDD Program which is a dream team.
    1. Announcement: https://twitter.com/curesyngap1/status/1623000399300153344?s=46&t=GQBKtxA44lny0qsvNyEkAw 
    2. Prosser Webinar: https://www.syngapresearchfund.org/webinars/targeting-alternative-splicing-of-syngap1-using-antisense-oligonucleotides
    3. Heller Webinar: https://www.syngapresearchfund.org/webinars/dr-elizabeth-heller-phd-upenn-understanding-syngap1 
  3. Ingo updated his famous gene timeline chart and included SYNGAP1 - we are on the map https://twitter.com/ingohelbig/status/1615693871769321472?s=46&t=XfQ6xkKY7cQaFZnRTbaSNw 
  4. Praxis had an earnings call, and it looks like they will have a big year and enough cash to get to next year.  https://investors.praxismedicines.com/news-releases/news-release-details/praxis-precision-medicines-provides-corporate-update-and-7 
  5. We have a new podcast!  Yes, SRF was one of the first to create its own podcast and now we have two. https://www.syngapresearchfund.org/syngap-stories
  6. Grants are due on March 1 and we already have a few! https://www.syngapresearchfund.org/post/134-apply-for-syngap1-research-grants-by-march-1st-or-september-1st 
  7. Rare Disease Day is end of month https://www.syngapresearchfund.org/post/133-what-is-rare-disease-day-why-is-it-the-last-day-in-february-syngap1
  8. Three ways to raise money!
    1. We have a match for all donations this month up to $20k, donate! https://secure.givelively.org/donate/syngap-research-fund-incorporated/srf-rare-disease-day-2023
    2. Sprint for Syngap: https://secure.givelively.org/donate/syngap-research-fund-incorporated/sprint4syngap-2023 
    3. MDBR: https://secure.givelively.org/donate/syngap-research-fund-incorporated/srf-million-dollar-bike-ride-mdbr-2023-for-syngap1 
  9. We have a clinical trials page. Check it out. https://www.syngapresearchfund.org/families/resources/clinical-trials 
  10. Many other signs of progress
    1. RSRT Gene Therapy Announcement. https://twitter.com/cnsdrughunter/status/1617522729900707840?s=46&t=XW7hz9hgm6v3IAOPAmS_Kg
    2. Rare Revolution Magazine on Siblings. https://rarerevolutionmagazine.com/rare-reports/ 
    3. Poison Exon Dance from the Carvill Lab. https://www.youtube.com/watch?v=jV3Ne0nmmNU 

 

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Episode 92 of #Syngap10 - February 8,  2023 

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

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