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Study Invitation - Everyone with a laptop can help us make an easy at home validated measure to de risk clinical trials.  Sign up now for this #SRFunded effort - #S10e122 #SRFFrazier

Study Invitation - Everyone with a laptop can help us make an easy at home validated measure to de risk clinical trials.  Sign up now for this #SRFund…

FromSynGAP10 weekly 10 minute updates on SYNGAP1


Study Invitation - Everyone with a laptop can help us make an easy at home validated measure to de risk clinical trials.  Sign up now for this #SRFund…

FromSynGAP10 weekly 10 minute updates on SYNGAP1

ratings:
Length:
11 minutes
Released:
Nov 1, 2023
Format:
Podcast episode

Description

Study Invitation - Everyone with a laptop can help us make an easy at home validated measure to de risk clinical trials.  Sign up now for this #SRFunded effort - #S10e122 #SRFFrazier 
We need endpoints and assessment tools.  We can help make it happen with this study.  Let’s get to 100 participants.  
 
#SRFFrazier Grant 1 https://www.prnewswire.com/news-releases/syngap-research-fund-announces-srffrazier-grant-to-dr-thomas-frazier-of-john-carroll-university-301219503.html 
 
How to join study! https://drive.google.com/file/d/1rbJ1zwX3UVDJzWq2oa8fWKL--Wik4gF-/view?usp=drive_link
 
Two papers already!!
Development of informant-report neurobehavioral survey scales for PTEN hamartoma tumor syndrome and related neurodevelopmental genetic syndrome
https://pubmed.ncbi.nlm.nih.gov/37045800/
 
Development of webcam-collected and artificial-intelligence-derived social and cognitive performance measures for neurodevelopmental genetic syndromes
https://pubmed.ncbi.nlm.nih.gov/37534867/ 
 
Raise funds for SYNGAP1 Research via SRF
https://syngap.fund/give
https://syngap.fund/gt23 > https://givebutter.com/SwK5Gt
 
Register for the Dinner & Conference!
29 Days until the Conference - Join us!
https://www.syngapresearchfund.org/professionals/syngap1-roundtable-2023-syngap-research-fund 
 
#SyngapConf Conference Agenda!
#S10e120 described the agenda… https://www.youtube.com/watch?v=Q9U-Ggz_K2I 
Detailed Agenda is here https://drive.google.com/file/d/1iKD-ZpDICXcaU85oBj0uWVVWuGrLJWJl/view 
 
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 122 of #Syngap10 - November 1, 2023
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
Released:
Nov 1, 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/