Embracing Complexity, Another Pipeline Neuren Pharma, It’s Party Time #S10e177
Description
Friday, August 8th, 2025. Week 32.
CURE SYNGAP1 aka SRF is getting more complex daily, and this is a good thing.
Today: Event planning, DCM Advising, Patient Advocacy Connecting, Infrastructure building, Conference Preparation.
DCM - Cunnane: https://pubmed.ncbi.nlm.nih.gov/40494056/
Blog on DCM: https://epilepsygenetics.blog/2025/06/20/revisiting-syngap1-through-a-disease-concept-model/
My comments at the 2024 Conference:
curesyngap1.org/resources/webinars/webinar-103-m-syngap1-conference-family-day-2024-whats-next/
PRESS
Neuren on #NNZ2591 https://www.linkedin.com/posts/curesyngap1_neuren-adds-syngap1related-disorder-to-nnz2591-activity-7359712115668013057-2-HX
CAMP4 in IPM
FUNDRAISING
3 events in 3 states… https://mailchi.mp/curesyngap1.org/3-events-1-mission-support-syngap1-families-this-fall?e=e95ed9a1c4
Gala for SYNGAP1 August 22, 2025 - Farmingdale, NJ cureSYNGAP1.org/Gala5
Beacon of Hope September 12, 2025 - Boston, MA cureSYNGAP1.org/Beacon25
Scramble for SYNGAP October 4, 2025 - Greer, SC cureSYNGAP1.org/Scramble
Also, Conference is in 117 Days
https://curesyngap1.org/events/conferences/cure-syngap1-conference-2025-hosted-by-srf/
STUDIES - MATTER
https://docs.google.com/presentation/d/1yRPHMRY3pXPgbOacDM9Sr906VejdJWsonUWvqRD9VVI/edit?usp=sharing
Pubmed is at 32 (One a week!)https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2025-2025&timeline=expanded&sort=date&sort_order=asc
SHARE BLOOD TO THE SRF BIOBANK AT CB!
Read here for more information: https://curesyngap1.org/blog/fueling-research-syngap1-combinedbrain-biorepository-roadshow/
VOLUNTEER
Join us: https://curesyngap1.org/volunteer-with-srf/
SOCIAL MATTERS
- 4,265 LinkedIn. https://www.linkedin.com/company/curesyngap1/
- 1,410 YouTube. https://www.youtube.com/@CureSYNGAP1
- 11,304 Twitter https://twitter.com/cureSYNGAP1
- 46k Insta https://www.instagram.com/curesyngap1/
NEWLY DIAGNOSED?
Next New Family Webinar - Tuesday Sept. 9th, 2025, 5 PM Pacific scheduled! https://curesyngap1.org/resources/webinars/webinar-105-syngap-research-fund-quarterly-webinar-new-syngap1-family-orientation/
Resources
https://curesyngap1.org/syngap1-resources-for-newly-diagnosed-families
Podcasts, give all of these a five star review!
https://cureSYNGAP1.org/SRFApple
https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917
Episode 177 of #Syngap10
#Advocate #PatientAdvocacy #UnmetNeed #SYNGAP1 #SynGAP #SynGAProMMiS
United States
