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Over 1200 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/
Episodes
Saturday Jan 21, 2023
Saturday Jan 21, 2023
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
Simons and Rare-X - What do you think?
- 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:
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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