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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 24, 2021
Keep growing our community, we need each other!
Friday Sep 24, 2021
Friday Sep 24, 2021
- Correction: Last week, reminder, we are here to clear the path for whomever wins, we don't care who wins we want this race to be won and easier to finish for everyone.
- Big thought: Complex Population, about to get more complex, "Post-Intervention"
- Sign up for Ciitizen: https://www.ciitizen.com/syngap1/
- Remember that Duke presentation, here it is: https://www.syngapresearchfund.org/post/combinedbrain-duke-university-team-up-to-receive-a-prestigious-fda-grant/
- Next week, lets' get connected Global Genes Conference https://globalgenes.org/event/rare-patient-advocacy-summit/
- Simons Searchlight in Spanish, English is still being scheduled: https://syngap.fund/SimonsSearchlight/
- Interesting paper on #SYNGAP1 and Sleep, the best part is the suggestion at the end to use this for a clinical endpoint! https://twitter.com/cureSYNGAP1/status/1439825860245090306?s=20
- Not Alone Coloring Book! https://syngap.fund/notalone
- Cannonball 11 DAYS . 3 dads driving across the US https://syngap.fund/cball #UFDcure
- Go to the GALA! 29 DAYS! https://syngap.fund/gala
- Easy to do https://syngap.fund/GNP
- 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 28 of #Syngap10 - September 24th, 2021
#F78A1 #ICD10 #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics
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