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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
Friday Sep 10, 2021
Friday Sep 10, 2021
#SYNGAP10 - Episode 26 - September 10th, 2021 - The future is coming, let’s build it!
A wonderful letter from a parent “on an island” that reminded us of the https://Syngap.fund/lens with http://joashline.com/ made my week.
Digital Lighthouse concept in the 12 Commandments Interview with Effie: https://effieparks.com/podcast/episode-094-mike-and-nasha
First principles, we are here to change the future and help each other.
The future is coming: Invitae & Ciitizen
- Read this FAQ https://www.ciitizen.com/announcement/
- Sign up for Ciitizen https://ciitizen.com/syngap1
We make the future by raising funds and building community, that is happening twice over with #UFDcure Cannonball & Care Leib Gala.
- https://syngap.fund/cball -> https://www.syngapresearchfund.org/cannonball 25 Days,
- https://syngap.fund/gala -> https://www.syngapresearchfund.org/gala 43 days (19 for tix)
Two big announcements next week!
Donate to our current effort for Clinical Trial Readiness https://Syngap.Fund/CTR
Sign up for this #podcast #SYNGAP10 here https://syngap.fund/10
This was episode 26 of #Syngap10
What is SYNGAP1? https://www.syngapresearchfund.org/home/what-is-syngap1
#F78A1 #ICD10 #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics
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