Health Podcast Library
Episode 94

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

Feb 23, 2023
11:52

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

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