SynGAP10 weekly 10 minute updates on SYNGAP1

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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 Aug 20, 2021

Telling our story and why it matters.

Friday Aug 20, 2021

Episode 23 of #Syngap10 - August 10th, 2021

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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