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Splash & #SYNGAPlove in 3 days, DSC & BCH Grants, more ICD attention! - Episode 15 of #Syngap10 - July 18th, 2021

Splash & #SYNGAPlove in 3 days, DSC & BCH Grants, more ICD attention! - Episode 15 of #Syngap10 - July 18th, 2021

FromSynGAP10 weekly 10 minute updates on SYNGAP1


Splash & #SYNGAPlove in 3 days, DSC & BCH Grants, more ICD attention! - Episode 15 of #Syngap10 - July 18th, 2021

FromSynGAP10 weekly 10 minute updates on SYNGAP1

ratings:
Length:
10 minutes
Released:
Jun 18, 2021
Format:
Podcast episode

Description

#SPLASH4SYNGAP is on MONDAY.
3 days until June 21st!
Take photos with the flyer https://syngap.fund/love = https://www.syngapresearchfund.org/post/share-your-love-for-someone-with-syngap1-for-splash4syngap 
Use hashtag #SYNGAPlove & #Splash4SYNGAP

DSC & BCH - It’s go time!  Let’s raise some funds. Read the blogs
Syngap.fund/biomarker = https://www.syngapresearchfund.org/post/srf-grant-to-boston-childrens-for-natural-history-biomarker-development
Syngap.fund/BCH = https://www.syngapresearchfund.org/post/srf-grant-to-boston-childrens-for-natural-history-biomarker-development

ICD-10
EveryLife case study! https://everylifefoundation.org/icd-code-roadmap/#toggle-id-13
Dravet Business Cards.   Copying is great!  Copy us.
ONE YEAR SOONER: Reminder why all this matters https://www.syngapresearchfund.org/post/oneyearsooner

ORCA: Via CB we are in.  Stay tuned here.  SYNGAP1 is one of the validation teams
Rett Press Release https://www.prweb.com/releases/rett_syndrome_research_trust_announces_development_o[…]on_ability_of_individuals_with_rett_syndrome/prweb18012275.htm
DUKE FDA GRANT https://populationhealth.duke.edu/news/orca-measure-expands-more-neurodevelopmental-diseases

GRANDPARENTS group is going strong
Tell your parents about https://syngap.fund/grand = https://www.syngapresearchfund.org/post/loving-a-grandchild-with-syngap1 
Also had the c.333del (6!) and regular wednesday bit.ly/SRFHH at 5 PM Pacific.
Released:
Jun 18, 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/