#SYNGAP10 – Ep. 23 – Telling our story and why it matters
Eduardo webinar was amazing, it’s on FB Live and we will have the YouTube up soon. Remember to register for Ana in September https://Syngap.Fund/Ana
SYNGAP1 is on the Compassionate Access List (CAL) for the SSA. This just happened and it’s due to the work of one of our families, thank you! https://Syngap.Fund/SSA
Great scientist conversations this week.
- New researcher looking into SYNGAP1, connecting with local families
- Rockstars reviewing a multi-gene grant
- One senior scientist called to say he’s got Fish and we should let people know.
Stories I will tell to help bring home how not simple this life is.
- Jadyne https://www.facebook.com/whatweneedyesterday
- Kyle https://www.youtube.com/channel/UCCbBNmkHLwba–nQ8LX0WCQ
- Carter https://www.youtube.com/watch?v=f6DsFUz-6HM
- Emmitt https://www.youtube.com/watch?v=tOampbK0uy0
- Amelia https://www.youtube.com/watch?v=gvwJqF_kuBI
What is SYNGAP1? https://www.syngapresearchfund.org/home/what-is-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
#Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics
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