We Need Better Social Security and disability payments- We did work most of life.

For someone receiving social security disability (SSDI) benefits, every dollar received every month matters. Many got 600 a week more unemployment but we living on a fixed poor income got nothing extra a month- we were forgotten Disability benefits exist to help those who cannot work a regular job due to a recent or lifelong... Continue Reading →

Rare Week In Washington DC

I had an amazing experience participating in Rare Week in Washington DC. I arrived Feb 25 and left Feb 29, 2020. Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. I... Continue Reading →

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