Happy Birthday SRF! Five years of making the future better! #FasterCures #UCLA #EEG #S10e108

Happy 5th Birthday SRF! https://mailchi.mp/syngapresearchfund.org/happy-5th-birthday-srf 

 

FASTERCURES

See #S10e98 https://www.youtube.com/watch?v=iOLjUdVUtqo 

https://milkeninstitute.org/centers/fastercures/building-nonprofit-capacity/train 

Census https://Syngap.fund/census - 1,238

 

CHOP

McKee Grant via AES https://twitter.com/jillianlmckee/status/1674037974684647424?s=46&t=8Y3-Ue9XY-QOTy42vH52Fw 

NHS Blog - https://www.syngapresearchfund.org/post/natural-history-study-at-childrens-hospital-of-philadelphia-is-a-natural-win-for-srf 

What to expect - https://www.syngapresearchfund.org/post/what-to-expect-when-youre-preparing-to-visit-the-syngap1-natural-history-study 

Their reflections: http://epilepsygenetics.net/2023/07/11/stxbp1-and-syngap1-natural-history-reflections-after-day-1-of-endd-clinic/

 

STUDIES

See #S10e107 for four opportunities, https://www.youtube.com/watch?v=boHYLi3S-Mk 

But also: UCLA - EEG - West Coast!

Missense, let’s make cell lines… watch this: https://www.syngapresearchfund.org/webinars/79-quantifying-perturbed-syngap1-function-caused-by-coding-mutations/ 

 

PODCASTS

Brain and Life 1 and 2

https://www.brainandlife.org/articles/after-their-children-were-diagnosed-with 

Part 1 - English - https://www.brainandlife.org/podcast/community-stories-navigating-rare-epilepsy-diagnosis 

Part 2 - Spanish - https://www.brainandlife.org/podcast/comunidad-sobre-como-afrontar-diagnostico-epilepsia-genetica 

 

Podcasts - Syngap1 Stories - Ashley Evans (11) and Monica Harding (12)

Ashley - https://www.syngapresearchfund.org/podcast-episodes/syngap1-stories-episode-011

Monica - https://www.syngapresearchfund.org/podcast-episodes/syngap1-stories-episode-012

 

CONFERENCE 

Pre-registration link: https://Syngap.Fund/2023conf  

Hotels ASAP: https://Syngap.Fund/2023hotel 

Merch https://www.bonfire.com/srf-syngap1-conference-2023/ 

 

All this was in today’s newsletter! https://Syngap.Fund/News33 

 

Ed is doing a great job with these, thank you Ed!

 

Volunteer with SRF! Info@SyngapResearchFund.org 

 

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 108 of #Syngap10 - July 13, 2023

#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat