Health Podcast Library
Episode 90

Seven Ways to advance SYNGAP1 Research this week. Post video, take survey, tell us your opinion on Rare-X/Simons, Update Ciitizen, #SRFWW, JR’s book, Plan. #S10e90

Jan 21, 2023
11:54
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Episode Description

Seven Ways to help:

- Post a video with a seizure

- Take a 10 minute survey

- Tell us how you feel about Simons and Rare-X

- Signup for or Update Ciitizen

- Signup for or share a Wednesday Warrior

- Buy JR’s book and give it to someone

- Plan your fundraiser this year

 

Videos of kids with seizures.  #SYNGAPseizure

#biomarker

 

Help Research with this brief survey.  Tell a friend and share these links - 150 & counting, $50 each. 

- Short link: https://syngap.fund/UCSF_survey

- Long link: fd91u8h6784.typeform.com/to/cvMzzG9z?utm_source=advocacy_org&utm_medium=email&utm_campaign=predictive_tool_survey&utm_term=syngap_research_fund

 

Simons and Rare-X - What do you think?

- https://syngap1.rare-x.org/

- https://www.simonssearchlight.org/research/what-we-study/syngap1/ 

 

Update your Ciitizen Records - Sign-IN https://app.ciitizen.com/ 

- Sign-UP https://ciitizen.com/syngap1 

 

Another special Wednesday Warrior, please read - 17 year old

- https://www.syngapresearchfund.org/syngap-warrior/eli-2 

- https://www.syngapresearchfund.org/get-involved/advocacy/share-your-story

 

JR WEBINAR - MORE OF EVERYTHING - BOOK

- Recording Available - https://syngap.fund/jr - Buy the book: https://www.amazon.com/More-Everything-extreme-special-emotional-ebook/dp/B0BQ2C7HNL 

 

Congrats to the Stromgaard Lab on a big award.

- https://twitter.com/cureSYNGAP1/status/1614948835067068416?s=20&t=KxO5w7Fk9MuOvc6wHyUWUw

 

Thank you to Ingo for updating your graphic on genes

- https://twitter.com/ingohelbig/status/1615693871769321472?s=46&t=XfQ6xkKY7cQaFZnRTbaSNw

 

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 90 of #Syngap10 - January 21,  2023 

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

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