RDD25 - Federal Funding - Hope vs Despair? Disability is Political. Take it or Advocate? #S10e163

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

https://www.usatoday.com/story/life/health-wellness/2025/02/25/elon-musk-donald-trump-disabled-people/80112602007/

 

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