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Time to fundraise for SYNGAP1 Research! Great info on Webinars, Blog, PRAX-222 & SynGAP Stories… #S10e94

Time to fundraise for SYNGAP1 Research! Great info on Webinars, Blog, PRAX-222 & SynGAP Stories… #S10e94

FromSynGAP10 weekly 10 minute updates on SYNGAP1


Time to fundraise for SYNGAP1 Research! Great info on Webinars, Blog, PRAX-222 & SynGAP Stories… #S10e94

FromSynGAP10 weekly 10 minute updates on SYNGAP1

ratings:
Length:
12 minutes
Released:
Feb 23, 2023
Format:
Podcast episode

Description

We have a $20k match! 
- https://syngap.fund/rdd23 
- https://secure.givelively.org/donate/syngap-research-fund-incorporated/srf-rare-disease-day-2023
 
#Sprint4Syngap
- https://syngap.fund/sprint23 
- Main page https://secure.givelively.org/donate/syngap-research-fund-incorporated/sprint4syngap-2023 
- 13 Teams! Four already raising funds: Team Tavilla, Team Naya, Hope4Hadley, Team Lizzy.  Nine more ready to go.
- Bonfire Shirts: https://www.bonfire.com/sprint-for-syngap-2023/ 
 
Amazing Webinars
- Brain Surgery - Done https://www.syngapresearchfund.org/webinars/69-syngap1-and-epilepsy-surgery-is-it-time-to-consider-a-different-toolbox 
- Jeff Coller - mRNA - March 16th  https://www.syngapresearchfund.org/webinars/68-harnessing-messenger-rna-metabolism-for-the-development-of-precision-gene-therapy-syngap1 
- Jillian McKee - Date TDB - https://syngap.fund/mckee 
 
Killer Blogs on Free Genetic Testing
- Simons https://www.syngapresearchfund.org/post/136-support-simons-searchlight-2023-campaign-sign-up
- How to get testing https://www.syngapresearchfund.org/post/137-how-to-get-free-genetic-testing-for-people-with-autism-special-needs-epilepsy
- Why it matters https://www.syngapresearchfund.org/post/138-why-getting-a-genetic-diagnosis-matters-especially-for-syngap1
- List of things to do this year! https://www.syngapresearchfund.org/post/139-srf-attended-advanced-therapies-week-in-miami-when-will-you-go-to-a-conference-for-syngap1 
 
PRAX-222 Day!
- https://twitter.com/cureSYNGAP1/status/1628189201232699393
- https://clinicaltrials.gov/ct2/show/NCT05737784?term=seizures&cond=Epilepsy&sfpd_s=02%2F08%2F2023&sfpd_d=14&sel_rss=new14
 
Syngap Stories is on!
https://www.syngapresearchfund.org/syngap-stories 
 
Ciitizen is over 200! Update your Ciitizen Records
- Sign-IN https://app.ciitizen.com/ 
- Sign-UP https://ciitizen.com/syngap1 
 
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 94 of #Syngap10 - February 23,  2023 
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
Released:
Feb 23, 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/