SynGAP10 weekly 10 minute updates on SYNGAP1

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

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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

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