EPISODE · Aug 9, 2025 · 14 MIN
Embracing Complexity, Another Pipeline Neuren Pharma, It’s Party Time #S10e177
from CURE SYNGAP1 PODCAST aka SYNGAP10
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 https://www.linkedin.com/posts/camp4-therapeutics_in-conversation-with-josh-mandel-brehm-ceo-activity-7359584335202541570-X-MX 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
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Embracing Complexity, Another Pipeline Neuren Pharma, It’s Party Time #S10e177
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