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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
Monday Oct 24, 2022
Monday Oct 24, 2022
CANNONBALL!
Donate now, it’s matched: https://www.justgiving.com/fundraising/ufd-cftc-2022
Brett talking about CB2 https://www.youtube.com/watch?v=2Wb0RO74UIo
UPenn interview https://www.youtube.com/watch?v=gFLEj_Uq1k8
Twitch: https://www.twitch.tv/ufdisciple
Brett: https://twitter.com/UFDTech
Peter: https://twitter.com/phalliburton
Kevin: https://fryereeves.com/kevin-w-frye/
VISITS
Pavel: https://twitter.com/SydneyStel/status/1584233335554854915/photo/2
Sydney: https://twitter.com/SydneyStel/status/1583079166014263296?s=20&t=YGu_OlFePZ5_jEhZvMj97g
Rebecca: https://twitter.com/SydneyStel/status/1584233335554854915/photo/3
Virginie: https://twitter.com/McNamarVirginie/status/1583871153231183872?s=20&t=YGu_OlFePZ5_jEhZvMj97g
Lauren: https://twitter.com/UFDTech/status/1584003603463045120?s=20&t=YGu_OlFePZ5_jEhZvMj97g
RAREBASE
AMAZING PRESS
FOX
https://www.foxnews.com/us/dads-drive-across-country-expand-awareness-kids-rare-disease
TONY
https://threadreaderapp.com/thread/1582766217810493441.html
UPCOMING EVENTS
NOVEMBER IS GIVING SEASON!
3 Weeks:
- November 12 in GA - Sparks of Hope Gala https://cbo.io/bidapp/index.php?slug=syngap
- November 14-15 in MA - PMC summit titled Personalized Medicine and the Patient
6 Weeks:
December 1&2 in TN - SYNGAP1 CONFERENCE 2022: Charting our rare disease treatment path https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2022-charting-our-rare-disease-treatment-path
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 79 of Syngap10 - October 23, 2022
#Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
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