Episode 163
RDD25 - Federal Funding - Hope vs Despair? Disability is Political. Take it or Advocate? #S10e163
Mar 1, 2025
26:09
Episode Description
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
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