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Telling our story and why it matters.

Telling our story and why it matters.

FromSynGAP10 weekly 10 minute updates on SYNGAP1


Telling our story and why it matters.

FromSynGAP10 weekly 10 minute updates on SYNGAP1

ratings:
Length:
11 minutes
Released:
Aug 20, 2021
Format:
Podcast episode

Description

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
Released:
Aug 20, 2021
Format:
Podcast episode

Titles in the series (100)

Over 900 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/