Friday, January 10, 2025

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

FUNDRAISING

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