SynGAP10 video update with Mike Graglia: Weekly 10 minutes on #SYNGAP1 from the #SynGAP Research Fund 501(c)(3)
by Syngap Research Fund, 501(c)(3)
April 5, 2024 10:20 am
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/
Recent Episodes
Grateful and grieving. SRF is growing with our community, all 1,400 of us! #S10e138
2 weeks agoStoke Praxis Longboard, CHOP & Adult Studies, Hope4theCure, Sprint4Syngap, & Social Matters #S10e137
4 weeks agoSYNGAP1 Ciitizen Paper is out! UCB Survey. UCSF is discovering SYNGAP. #Sprint4SYNGAP 2024 is on! Fitter at the WH. #S10e136
1 month ago#RareOnTheHill and #SRFboard in DC were epic. It’s going to be a great, year, get some #RareBrewCoffee! #S10e135
2 months agoA very important questionnaire. Repurposing update & ethics. Grant shaping in progress! #S10e134
2 months agoWhat is this SYNGAP1 illness / disease / syndrome / NDD / DEE / MRD5 / NSID actually called? #S10e133
2 months agoCongratulations to Encoded, Jaguar, Aparito and what will we count? How will we know these therapies are working? #S10e132
2 months agoSYNGAP1 is complex, we need to partner with our clinicians to improve care & get ready for repurposing. #S10e131
3 months ago2024 is off to a GREAT start. Time to get clinical, let’s get all these studies oversubscribed and make sure industry knows we are ready. #S10e130
3 months agoHappy New Year! Happy 10th Birthday Tony! Congrats #Longboard. Publication update. Good feedback and frustrating stories. #S10e129
4 months ago