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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/
Episodes
Saturday Sep 10, 2022
Saturday Sep 10, 2022
Praxis + Ciitizen = PROGRESS #S10e74
PRAXIS & CIITIZEN
Webinar On-Demand Registration - https://pages.questexinfo.com/invitaereg09082022/
Twitter - https://twitter.com/cureSYNGAP1/status/1568223901628637184?s=20&t=_UdtyirDq-dfLJD9Eo3GPw/
Facebook - https://www.facebook.com/cureSYNGAP1/posts/pfbid02usJYQPSQEr5yrUkhkfmcwhfit6WLgUFK56VXCaEVypCuVvxNb74pnkTiXqgZsdFtl/
LinkedIn - https://www.linkedin.com/feed/update/urn:li:activity:6973995629647720448/
LEON
Light a candle for Leon here https://www.bestattung-huettner.at/sterbefall/52048/?action=gedenkkerzen
GRANTS
So much good news coming. We need to raise more money! Please see list below!
GLOBAL GENES IS NEXT WEEK!
If you can’t come in person, register virtually! https://globalgenes.org/event/rare-patient-advocacy-summit/
STUFF I DIDN’T TALK ABOUT BUT WILL SOON
- Rarebase
- EXN ;-)
This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast
Apple podcasts: https://syngap.fund/10a
Episode 74 of #Syngap10 - September 9, 2022
#GlobalGenes #PRAX090 #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration
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