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Let’s get to work for these 808 kids! - Episode 17 of #Syngap10 - July 2nd, 2021

Let’s get to work for these 808 kids! - Episode 17 of #Syngap10 - July 2nd, 2021

FromSynGAP10 weekly 10 minute updates on SYNGAP1


Let’s get to work for these 808 kids! - Episode 17 of #Syngap10 - July 2nd, 2021

FromSynGAP10 weekly 10 minute updates on SYNGAP1

ratings:
Length:
11 minutes
Released:
Jul 2, 2021
Format:
Podcast episode

Description

#SYNGAP10 - Episode 17 - 2 July 2021 
- Thanks for listening, now please share!
- Newsletter: https://Syngap.Fund/July
- Census: https://Syngap.Fund/Census Honestly, it’s low.  Remember Covid.
- Frazier: 7/17 9 AM https://www.syngapresearchfund.org/webinars/improving-the-assessment-of-syngap1-by-creating-online-measures-for-parents-and-patients
- Palma: 8/19 10 AM https://www.syngapresearchfund.org/webinars/interpretation-of-syngap1-variants-srf
- Just talking yesterday to someone who redid testing: Genetic Testing needs to be updated every few years.
- July 1 paper: “We strongly recommend that ES/GS be considered as a first- or second-tier test for patients with CA/DD/ID.” https://www.nature.com/articles/s41436-021-01242-6
- Time for some fundraising: https://Syngap.Fund/CTR Deal done, Board reviewed. Post-docs staffed.  Let’s make it happen… everyone can help. 
- Remember, SRF is the best deal ever: https://syngap.fund/smartdonors
- Subscribe at https://syngap.fund/10
Released:
Jul 2, 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/