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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 Apr 09, 2021
Friday Apr 09, 2021
SYNGAP10, episode 5, 9 April 2021
- Biomarker EEG work - very exciting
- IPSCs - Prime editing, Base editing, tRNA etc. Based on Ciitizen data!
- SSB30 Webinar! Check it out on April 15th. https://syngap.fund/ssb Seizure, Sleep & Behavior
- Ciitizen 103 signed up, 8 are VUS, 95 spots used, 5 TO GO. Sign up now: Ciitizen.com/SYNGAP1
- CNF Caregiver survey, due April 23rd. https://syngap.fund/cnf
- Kids don't get Dx'd, families do. Grandparent article who wants to talk to Barbara? https://syngap.fund/grand
- Sprint! Bakers dozen 13 groups over $1k! 62K+ https://syngap.fund/sprint
- Reminders: Enzo 8, Brazil, was our Warrior this week. http://syngap.fund/warriors
- Also two webinars coming up http://syngap.fund/webinar GI on 4/22 and Advocacy on 5/6.
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