RDD25 - Federal Funding - Hope vs Despair? Disability is Political. Take it or Advocate? #S10e163
CURE SYNGAP1 PODCAST aka SYNGAP10
Audio is streamed directly from the publisher (mcdn.podbean.com) as published in their RSS feed. Play Podcasts does not host this file. Rights-holders can request removal through the copyright & takedown page.
Show Notes
Friday, February 28, 2025 - Week 9
Hope vs. Despair?
Despair:
- NIH Cuts
NBC https://www.nbcnews.com/science/science-news/trumps-nih-budget-cuts-threaten-research-stirring-panic-rcna191744
NYT https://www.nytimes.com/2025/02/25/briefing/president-trump-vs-medical-research.html?unlocked_article_code=1.0U4.-7WW.F3yrk2tjpLJe&smid=url-share - FDA Staffing Cuts
https://www.biopharmadive.com/news/fda-layoffs-trump-doge-hhs-cuts-impact/740499/ - Medicaid Cuts https://www.disabilityscoop.com/2025/02/27/house-vote-tees-up-billions-in-cuts-to-medicaid-disability-services/31321/
https://www.politico.com/news/2025/02/27/republicans-medicaid-expansion-budget-00206612 - President who doesn’t care https://time.com/7002003/donald-trump-disabled-americans-all-in-the-family/
- DOGE head who also doesn’t care
Hope:
- Pipeline https://curesyngap1.org/syngap1-related-disorder-therapeutic-pipeline/
- Community https://curesyngap1.org/team/
- Global: https://syngapglobal.net/
- ICD-10 Code https://www.rareepilepsynetwork.org/about-icd-codes
Disability is Political
Take it or Advocate?
Taking it does not work.
Advocate:
- SRF https://curesyngap1.org/srf-legislative-advocacy-efforts-for-syngap1/
- ELF https://everylifefoundation.org/
- Research America
https://www.researchamerica.org/marys-letters/research-advocates-unite-in-force/ - Alliance for a Stronger FDA
https://www.strengthenfda.org/ - Modern Medicaid Alliance
https://modernmedicaid.org/about-the-alliance/
Annie Kennedy’s comments at the ELF Capitol Briefing: https://www.youtube.com/live/F6kfKsYCQYU?si=ihWOl7Lda7Steg3p&t=3391
Responsibility to those who cannot or will not be here. 10% of Americans. 10k diseases, all chronic. Childhood. Do not have FDA approved treatments, no cures. Staggering Financial Costs aka Toxicities. Efforts to date have allowed for interventions that may still matter. We have invested so much.
Episode 163 of #Syngap10
#Advocate #PatientAdvocacy #UnmetNeed #SYNGAP1