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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 03, 2021
Hope is the smartest move!
Friday Sep 03, 2021
Friday Sep 03, 2021
-That incredible webinar https://Syngap.fund/ana was a source of hope!
-The newsletter came out yesterday; it’s really good: https://syngap.fund/sept
-Families in the US, UK, Canada & Australia are reminded to sign up for the largest collection of SYNGAP1 data on earth for free: https://ciitizen.com/syngap1
-Donate to our current effort for Clinical Trial Readiness https://Syngap.Fund/CTR
-Sign up for this #podcast #SYNGAP10 here https://syngap.fund/10
-What is SYNGAP1? https://www.syngapresearchfund.org/home/what-is-syngap1
This was episode 25 of #Syngap10 - September 3rd, 2021
#F78A1 #ICD10 #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics
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