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#SYNGAPconf22 was a hit, join us in 2023… #S10e86

#SYNGAPconf22 was a hit, join us in 2023… #S10e86

FromSynGAP10 weekly 10 minute updates on SYNGAP1


#SYNGAPconf22 was a hit, join us in 2023… #S10e86

FromSynGAP10 weekly 10 minute updates on SYNGAP1

ratings:
Length:
15 minutes
Released:
Dec 29, 2022
Format:
Podcast episode

Description

PRE-REGISTER FOR NEXT YEAR
https://twitter.com/cureSYNGAP1/status/1608462863819067397
https://docs.google.com/forms/d/e/1FAIpQLSfetAr8YH41nbJrJy1uXqJeS37nQD6khjDn-LiFxIWo5oUBjA/viewform 
 
Buy this book on Amazon or on JR’s website - #MoreOfEverthing by JR
https://janiereade.com/
https://www.amazon.com/More-Everything-extreme-special-emotional-ebook/dp/B0BQ2C7HNL 
 
JACKIE KANCIR STORY
https://www.facebook.com/cureSYNGAP1/posts/pfbid0gTTnF77VdbTirweTyKqKxHzDkNz66jUxxnvwMzjUxzwzFU1Q1U4HYrDywFMoBeAkl
https://twitter.com/cureSYNGAP1/status/1608216895240671232?s=20&t=INvuB36y5oJM-bL_RKtscg
https://www.linkedin.com/feed/update/urn:li:activity:7013986280099250177
 
CIITIZEN DATA BY CHOP
https://twitter.com/JillianLMcKee/status/1600202742269501442  
 
SIGN UP FOR CIITIZEN
ciitizen.com/syngap1
 
SCIENCE DAY AGENDA
https://twitter.com/sandysmith317/status/1598322472037801984 
 
FAMILY DAY AGENDA
8:30 AM SYNGAP1 CAREGIVERS: REALITY, RESILIENCE AND RESOURCES - Becky 10:45 AM REGISTRIES - Invitae, Simons, Rare-X w/Q&A
12:15 PM GETTING CLINICAL TRIAL READY - Kathie Bishop, Acadia
1:15 PM PRAXIS
1:40 PM TAKING ON BEHAVIORS - Jackie Kancir, SYNGAP1 Mom & Advocate
2:30 PM MORE OF EVERYTHING BOOK LAUNCH - Janie Reade, SYNGAP1 Mom & Author
3:20 PM SRF LATIN AMERICA - FONDO DE INVESTIGATION SYNGAP - Vicky
3:45 PM SRF YEAR IN REVIEW - Rebecca, Peter, Pavel
4:30 PM LOOKING TO THE FUTURE - Mike
6:30 PM COMMUNITY DINNER
 
This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast

Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818
Episode 86 of #Syngap10 - December 29,  2022 
#Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
Released:
Dec 29, 2022
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/