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BREAKING NEWS ?re ICD-10 & other goodness around #SSB30 & #sprint4syngap - Episode 8 of #Syngap10 - April 30th, 2021

BREAKING NEWS ?re ICD-10 & other goodness around #SSB30 & #sprint4syngap - Episode 8 of #Syngap10 - April 30th, 2021

FromSynGAP10 weekly 10 minute updates on SYNGAP1


BREAKING NEWS ?re ICD-10 & other goodness around #SSB30 & #sprint4syngap - Episode 8 of #Syngap10 - April 30th, 2021

FromSynGAP10 weekly 10 minute updates on SYNGAP1

ratings:
Length:
10 minutes
Released:
Apr 30, 2021
Format:
Podcast episode

Description

SYNGAP10 - Episode 8 - BREAKING NEWS
This episode is an absolute must.  Don't miss it.
 - Reminder that #SSB30 is happening now, the first pharma sponsored study on #ciitizen.  If you are enrolled in Ciitizen, start doing your seizure tracker today:
? https://Syngap.Fund/ST
 - If you have not yet signed up for Ciitizen, there is still time, it's free: https://www.ciitizen.com/syngap1/ 
 - ? Breaking: We have reason to believe that we will get an ICD-10 code in June, effective 10/1/21.  This is a big deal.
 Background link: https://www.syngapresearchfund.org/post/syngap-could-have-an-icd-10-code-f78-a1-as-soon-as-next-year
 Referenced link from podcast: https://www.cms.gov/medicare/acute-inpatient-pps/fy-2022-ipps-proposed-rule-home-page
- #Sprint4Syngap raised $122,500+.  Huge thanks to everyone.  Two great videos of the community building that took place are:
 Colombia ?? https://youtu.be/4jYGJJnbLf8 
 Boston https://youtu.be/edlfSW1kvKE
- Welcome to 4 new families just diagnosed in the past week.  ?
- If you want to support SRF, call us, there is some much good work to do!
This is a podcast, sign up via your favorite service or watch previous episodes at: https://www.syngapresearchfund.org/syngap10-podcast 
Released:
Apr 30, 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/