We are on the Hill Advocating for a better future – Sprint, DREEM, Travel & NET -  #S10e162
Tuesday, February 25, 2025 - Week 9
 
ADVOCACY - Thank you Jessica, Jaime and Vicky for repping SRF at ELF RD Week
https://www.linkedin.com/posts/curesyngap1_raredc2025-syngap1-advocacy-activity-7300237949831368705-FIRS 
 
SPRINT4SYNGAP - April 26, 2025
Webinar: cureSYNGAP1.org/S4S25
Guide: cureSYNGAP1.org/S4SGuide
 
LEVERAGE ON OUR GRANTS
#Finland #Missense: https://www.linkedin.com/posts/graglia_kulttuurirahastontuella-skr2025-syngap1-activity-7296289488912191489-rWl-/?utm_source=share&utm_medium=member_desktop&rcm=ACoAAAAD8f4B7JC4TMss45Q8hrsq5kiceI0Z8HE
 
STUDY OF THE WEEK - Email [email protected]
Dreem: https://curesyngap1.org/resources/studies/beacon-dreem-eeg-device-study-in-syngap1/ 
 
Study Tracker page: https://docs.google.com/spreadsheets/d/1oQLNi85AUbISmcW0KbsgGn4cBK_4MNuvwGlKUUKLyIQ/edit?usp=sharing 
 
IMPACT REPORT
NL43 cureSYNGAP1.org/NL43 
 
ONLINE DID YOU KNOW
We have a calendar now! https://curesyngap1.org/calendar/
Brochure is updated: cureSYNGAP1.org/Brochure 
YouTube - Adding Family Day Talks - https://www.youtube.com/playlist?list=PLjpr3a14_ls2ummdbWyUdvRpMcQBlRXy2 
 
COMPANY OF THE WEEK - Stoke & Biogen!
STK ($0.45Bn) partners with BIIB ($20.5Bn)
https://investor.stoketherapeutics.com/news-releases/news-release-details/biogen-and-stoke-therapeutics-enter-collaboration-develop-and
 
#SpecialNeedsTRAVEL
e31 of SYNGAP1 Stories. Navarros - cureSYNGAP1.org/Stories 
Comments on YouTube are great, see this presentation by SRF’s Heather on travel… https://youtu.be/c7S7q_gK4Bk?si=wM4Ter_q8-37Yg8V
 
RESEARCH UPDATE
There are 318 papers on or related to SYNGAP1 since 1998, but 54 of those are in 2024!  So far 10 (Coller included) for 2025.
https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2025&sort=pubdate&timeline=expanded

Frazier paper on NET: https://onlinelibrary.wiley.com/doi/10.1002/aur.3290

 
VOLUNTEER SPOTLIGHT
Toby and John Brimsek are tireless.  Thank you. https://curesyngap1.org/team/volunteers/emily-brimsek-phd/ 
 
VOLUNTEER 
Join us: https://curesyngap1.org/volunteer-with-srf/
 
CONFERENCE
Pre-register now: December 4 & 5 – https://cureSYNGAP1.org/Pre25 
REGISTER FOR BRAIN DONATION via https://www.autismbrainnet.org/
https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2024.1486227/full
 
SOCIAL MATTERS
- 3,937 LinkedIn.  https://www.linkedin.com/company/curesyngap1/
- 1.28k YouTube.  https://www.youtube.com/@CureSYNGAP1 
- 11.5k Twitter https://twitter.com/cureSYNGAP1
- 46.6k Insta https://www.instagram.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 162 of #Syngap10 
#CureSYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness  #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1

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