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A patient dosed, new site, audited financials, conference reviews, EOY giving, two studies to join! - #S10e126

A patient dosed, new site, audited financials, conference reviews, EOY giving, two studies to join! - #S10e126

FromSynGAP10 weekly 10 minute updates on SYNGAP1


A patient dosed, new site, audited financials, conference reviews, EOY giving, two studies to join! - #S10e126

FromSynGAP10 weekly 10 minute updates on SYNGAP1

ratings:
Length:
7 minutes
Released:
Dec 12, 2023
Format:
Podcast episode

Description

Today a SYNGAP1 patient was dosed with 4PB.  Thank you Dr. Grinspan!
 
Have you seen our new site? Thx Ed, Dan and team! www.cureSYNGAP1.org 
 
Finances, we have two years of audited financials on https://curesyngap1.org/finances/ 
 
There are two reviews of the SYNGAP1 Conference and one of AES you need to read
 S1 https://curesyngap1.org/blog/syngap1-conference-2023-science-day-a-summary/ 
 S1 https://www.draccon.com/dracaena-report/syngap2023  
 AES https://www.draccon.com/dracaena-report/aes2023  
 
End of year Giving is afoot!
 Give up your cup https://givebutter.com/Iuwfzd  
 Albrecht Match https://givebutter.com/uNxleH  aka Syngap.Fund/Harper
 General Giving https://curesyngap1.org/donate/ 
 
Sign up for Adult Study led by Dr. Andrade, if you loved one is 17 or over please email Ilakkiah.Chandran@uhn.ca 
 
Sign up for NET Study, email KHuba@jcu.edu check out #S10e122 and the #SRFFrazier Release if you are not up to date!
https://www.eurekalert.org/news-releases/1006753
 
Give all three of our podcasts 5 stars everywhere.  
https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917 
 
This is a podcast subscribe!
https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1/id1560389818

Episode 126 of #Syngap10 - December 12, 2023
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
Released:
Dec 12, 2023
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/