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What is Hypertrophic Olivary Degeneration?
You’ve been diagnosed with hypertrophic olivary degeneration. Now what? Well, first things first, you probably want to practice saying this out loud a few dozen times to get it right. Let me tell you, it’s a mouthful. It’s fate’s funny little joke. Give a rare brain disease a ridiculous name that almost no one can…
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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…
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Grocery Shopping with HOD: A Survival Guide
Grocery shopping can be difficult for anyone, but especially for those with HOD and other disabilities. In fact, it can seem so overwhelming and impossible that you may want to skip it altogether. And to be clear, it is absolutely OK to do that! But what if you don’t have a care partner or neighbor…
