# @curesyngap1 on YouTube

- **Type:** Video
- **Original URL:** https://youtube.com/watch?v=iDvW7HfzSGA
- **Gondola URL:** https://gondola.cc/posts/27555887-curesyngap1-youtube
- **Thumbnail:** https://img.gondola.cc/tr:w-,h-,fo-auto/postThumbnails/61622eac23.jpg
- **Posted:** 2025-03-01T01:54:10.000+00:00

## Caption

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

## Stats

- **Views:** 300
- **Likes:** 15
- **Shares:** 0
- **Comments:** 4

## Tags

patientadvocacy, syngap1, syngap10, advocate, unmetneed

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