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Multiple studies enrolling now, start with Ciitizen and keep going...

Multiple studies enrolling now, start with Ciitizen and keep going...

FromSynGAP10 weekly 10 minute updates on SYNGAP1


Multiple studies enrolling now, start with Ciitizen and keep going...

FromSynGAP10 weekly 10 minute updates on SYNGAP1

ratings:
Length:
11 minutes
Released:
Nov 5, 2021
Format:
Podcast episode

Description

Episode 34 of #Syngap10 - November 5th, 2021  
 
- 3rd Annual Synapse Roundtable will be Dec 3, 2021, sign up at https://syngap.fund/rt3
- We have 22 spots left in this cohort of Ciitizen, sign up in the next 10 days: https://Ciitizen.com/SYNGAP1 
-Three more studies are enrolling now/soon:
   -Dr. Andrade - Watch the video and let us know if you have an adult who would like to participate. https://youtu.be/WyhRDePe0Jc 
- Dr. Frazier - Reach out to info@syngapresearchfund.org to participate.  Here is the webinar. https://www.syngapresearchfund.org/webinars/improving-the-assessment-of-syngap1-by-creating-online-measures-for-parents-and-patients 
- ORCA - Once we get the greenlight from FDA we will start recruiting.  Here is a link with more info: https://www.syngapresearchfund.org/post/combinedbrain-duke-university-team-up-to-receive-a-prestigious-fda-grant 
- Great newsletter, make sure to read it: https://syngap.fund/Nov
- Giving Tuesday Fundraiser: https://syngap.fund/gt21
- ICD-10 Code: https://syngap.fund/F78A1 ICD11 Effort: https://syngap.fund/ICD11
- What is SYNGAP1?  https://www.syngapresearchfund.org/home/what-is-syngap1
- Sign up for this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10
- Happy GC Awareness Day!
 
#SynapseRT #F78A1 #ICD10 #ICD11  #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics
Released:
Nov 5, 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/