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Can We Define Ourselves Outside of Our Rare Disease?
Define Yourself Before The World Does it For You! Last year, I was recording an episode of the Major Pain podcast hosted by Jesse Mercury. Jesse was walking me through the format to get me comfortable, and let me know that the first thing we address is an introduction. Who are you without your disease(s)? …
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Big Feelings, Small Antidotes
How I am dealing with depression, sadness, melancholy and chronic illness I ruined Valentine’s Day. My husband said I didn’t. But as I sat in his recliner, telling him that I feared one day that he would wake up to a dead body, tears streaming down my face, as he opened the 3D replica of…
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Research Threatened: Changes to Medicaid and Medicare Data Access
Researchers heavily rely on Medicaid and Medicare data to understand the experiences of individuals with autism and other developmental disabilities. However, a new proposal from the Centers for Medicare & Medicaid Services (CMS) threatens to limit access to this crucial information for research. The proposed changes include requiring all access to go through CMS’s cloud-based…