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

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

FromSynGAP10 weekly 10 minute updates on SYNGAP1


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

FromSynGAP10 weekly 10 minute updates on SYNGAP1

ratings:
Length:
16 minutes
Released:
Feb 8, 2023
Format:
Podcast episode

Description

Last week RegEl announced that their CNS Pipeline: Dravet, SCN2A & SYNGAP1 News https://twitter.com/cureSYNGAP1/status/1621293977579442177
Follow her https://twitter.com/navneetkmatharu
And him https://www.linkedin.com/in/jordane-dimidschstein-a1114852 

Yesterday, Penn announced a $25m grant to the ENDD Program which is a dream team.Announcement: https://twitter.com/curesyngap1/status/1623000399300153344?s=46&t=GQBKtxA44lny0qsvNyEkAw 
Prosser Webinar: https://www.syngapresearchfund.org/webinars/targeting-alternative-splicing-of-syngap1-using-antisense-oligonucleotides
Heller Webinar: https://www.syngapresearchfund.org/webinars/dr-elizabeth-heller-phd-upenn-understanding-syngap1 

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 
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 
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
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 
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
Three ways to raise money!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
Sprint for Syngap: https://secure.givelively.org/donate/syngap-research-fund-incorporated/sprint4syngap-2023 
MDBR: https://secure.givelively.org/donate/syngap-research-fund-incorporated/srf-million-dollar-bike-ride-mdbr-2023-for-syngap1 

We have a clinical trials page. Check it out. https://www.syngapresearchfund.org/families/resources/clinical-trials 
Many other signs of progressRSRT Gene Therapy Announcement. https://twitter.com/cnsdrughunter/status/1617522729900707840?s=46&t=XW7hz9hgm6v3IAOPAmS_Kg
Rare Revolution Magazine on Siblings. https://rarerevolutionmagazine.com/rare-reports/ 
Poison Exon Dance from the Carvill Lab. https://www.youtube.com/watch?v=jV3Ne0nmmNU 

 
Ciitizen is over 200! Update your Ciitizen Records
- Sign-IN https://app.ciitizen.com/ 
- Sign-UP https://ciitizen.com/syngap1 
 
This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here
- https://www.syngapresearchfund.org/syngap10-podcast

Apple podcasts: 
- https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818
Episode 92 of #Syngap10 - February 8,  2023 
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
Released:
Feb 8, 2023
Format:
Podcast episode

Titles in the series (100)

Over 900 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/