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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
Tuesday Jan 14, 2025
Tuesday Jan 14, 2025
RESEARCH UPDATE
There are 313 papers on or related to SYNGAP1 since 1998, but 54 of those are in 2024! So far 2 for 2025.
https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2025&sort=pubdate&timeline=expanded
Census = 1,530! https://cureSYNGAP1.org/Census, China was only 113, but now they are 246!
Check out these social posts on our https://cureSYNGAP1.org/SRFPaper
- https://www.linkedin.com/posts/curesyngap1_syngapresearchfund-syngap1-curesyngap1-activity-7285038902300569602-XTGJ
- https://x.com/cureSYNGAP1/status/1879272983077781804
- https://fb.watch/x6KdWuLSA8/
STUDIES AND TRIALS ARE HAPPENING NOW
https://docs.google.com/spreadsheets/d/1oQLNi85AUbISmcW0KbsgGn4cBK_4MNuvwGlKUUKLyIQ/
FUNDRAISING
- Coast2Coast Challenge $359,280 Syngap.Fund/C2C
- FUNDRAISE https://syngap.fund/FR
- #Sprint4Syngap is launching… https://secure.givelively.org/donate/syngap-research-fund-incorporated/sprint4syngap-2025
VOLUNTEER SPOTLIGHT
Sara Driscoll - https://curesyngap1.org/team/volunteers/sara-driscoll/
CONFERENCE
Pre-register now: December 4 & 5 – https://cureSYNGAP1.org/Pre25
VOLUNTEER
Join us: https://curesyngap1.org/volunteer-with-srf/
SOCIAL MATTERS
- 1,260 YouTube. https://www.youtube.com/@CureSYNGAP1
- 3,906 LinkedIn. https://www.linkedin.com/company/curesyngap1/
- 11,670 Twitter https://twitter.com/cureSYNGAP1
- 47k Insta https://www.instagram.com/curesyngap1/
- 464 TikTok https://www.tiktok.com/@curesyngap1
NEWLY DIAGNOSED?
New families have resources here! https://syngap.fund/Resources
Podcasts, give all of these a five star review!
https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917
Episode 158 of #Syngap10
#CureSYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1
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