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Ciitizen continues to evolve, but essential aspects remain: SYNGAP1 as a lead program & a strong team.  +Support Harper #JuggleIsReal - #S10e127

Ciitizen continues to evolve, but essential aspects remain: SYNGAP1 as a lead program & a strong team.  +Support Harper #JuggleIsReal - #S10e127

FromSynGAP10 weekly 10 minute updates on SYNGAP1


Ciitizen continues to evolve, but essential aspects remain: SYNGAP1 as a lead program & a strong team.  +Support Harper #JuggleIsReal - #S10e127

FromSynGAP10 weekly 10 minute updates on SYNGAP1

ratings:
Length:
10 minutes
Released:
Dec 14, 2023
Format:
Podcast episode

Description

12/28/20 - SRF Blog - https://curesyngap1.org/blog/10-reasons-we-chose-ciitizen-for-the-syngap1-digital-natural-history-study-srfdociitizen/
 
9/7/21 - Invitae Press Release Acquisition - https://ir.invitae.com/news-and-events/press-releases/press-release-details/2021/Invitae-to-Acquire-Ciitizen-to-Strengthen-its-Patient-Consented-Health-Data-Platform-to-Improve-Personal-Outcomes-and-Global-Research/default.aspx
 
9/20/22 - Praxis uses ciitzen data for FDA submission for SCN2A https://www.prnewswire.com/news-releases/invitaes-real-world-ciitizen-data-utilized-in-praxis-precision-medicines-prax-222-ind-filing-301627677.html
 
10/25/23 - Pre-print of paper on SCN2A EEG Biomarker where ciitizen was involved https://www.medrxiv.org/content/10.1101/2023.10.24.23296360v1
 
12/1/23 - AES Poster - https://x.com/JillianLMcKee/status/1731420167672942878/
 
12/13/23 - Invitae Press Release Divest - https://ir.invitae.com/news-and-events/press-releases/press-release-details/2023/Inv[…]h-Data-Platform-and-Implements-Further-Cost-Cuts/default.aspx
 
12/13/23 - Ciitizen Announcement - https://www.ciitizen.com/announcement/
 
Dream Team
https://www.linkedin.com/in/nashafitter/
https://www.linkedin.com/in/faridvij/
https://www.linkedin.com/in/elli-brimble-82774798/
https://www.linkedin.com/in/deven-mcgraw-6650285/
 
Hope for Harper is still going, help us meet the $15k match!
https://syngap.fund/harper 
https://givebutter.com/uNxleH
 
The Juggle is Real
Episode 211 of Once Upon A Gene (also seen in episode 41 and 94!) https://effieparks.com/podcast/episode-211-the-juggle-is-real 
 
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 127 of #Syngap10 - December 14, 2023
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
Released:
Dec 14, 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/