Friday, January 10, 2025

NEWS


Census = 1,530! https://cureSYNGAP1.org/Census
https://cureSYNGAP1.org/NL42




All 2024 Science Conference videos (27 total) are now on our website and organized in this blog: https://cureSYNGAP1.org/SC24


Pods, listen to this: https://curesyngap1.org/podcasts/syngap1-stories/zoe-bailey/

 
AES
JW - Everybody who was at AES felt the temperature change. Things are getting real and timelines are moving faster. Our job now is to convince donors that we need more fuel in the tank so we don’t miss opportunities indicative in families that this is no longer one day, but this is soon and they need to get ready.
Veronica Hood: “Disease Modification is on the Horizon for DS” (and the rest of us!) https://dravetfoundation.org/spotlight-on-dravet-insights-from-the-2024-american-epilepsy-society-meeting/
 
STUDIES AND TRIALS ARE HAPPENING NOW
Rochester, Eye Tracking, Sleep.  Please sign up via link below and listen this from Peter: https://x.com/phalliburton/status/1873581064788336988 then start signing up…
https://docs.google.com/spreadsheets/d/1oQLNi85AUbISmcW0KbsgGn4cBK_4MNuvwGlKUUKLyIQ/
FUNDRAISING

Coast2Coast Challenge $338,280 Syngap.Fund/C2C 
FUNDRAISE https://syngap.fund/FR 
Go Nikolas! $3,780  https://secure.givelively.org/donate/syngap-research-fund-incorporated/nikola-s-fundraiser
#Sprint4Syngap is launching… https://secure.givelively.org/donate/syngap-research-fund-incorporated/sprint4syngap-2025

 
VOLUNTEER SPOTLIGHT: 
Ed Gabler https://curesyngap1.org/team/leadership-team/ed-gabler/
 
RESEARCH UPDATE
There are 312 papers on or related to SYNGAP1 since 1998, but 54 of those are in 2024!  So far 0 for 2025.
https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2024&sort=pubdate&timeline=expanded
 
CONFERENCE
Pre-register now: December 4 & 5 – https://cureSYNGAP1.org/Pre25 
 
VOLUNTEER 
https://curesyngap1.org/volunteer-with-srf/
 
SOCIAL MATTERS
- 1,250 YouTube.  https://www.youtube.com/@CureSYNGAP1 
- 3,899 LinkedIn.  https://www.linkedin.com/company/curesyngap1/
- 11,688 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 157 of #Syngap10 
#CureSYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness  #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1

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