When the NIH and FDA canceled their Rare Disease Day celebration in Bethesda on February 28, TMA, in partnership with Nori’s Fight and Myositis International Health and Research Collaborative Alliance (MIHRA), brought the myositis community together virtually to share the latest in myositis research and hear those who live with these diseases tell the stories…
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When the NIH and FDA canceled their Rare Disease Day celebration in Bethesda on February 28, TMA brought the myositis community together virtually for the We Care for Rare Summit. In partnership with Nori’s Fight and Myositis International Health and Research Collaborative Alliance (MIHRA, community members shared the latest in myositis research and heard the…
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By Dorothy Vetrano In January, Shawna Nielsen posted about her “Top 10 Tips for the Newly Diagnosed.” One of her tips was to create a medical binder. I’ve done this, and I highly recommend it. It has become a lifesaving tool for me. Upon hearing the news of my dermatomyositis diagnosis back in 2020, I…
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By Mike Matthews At the end of 2021, Cambridge Dictionary announced their Word of the Year was “perseverance.” On top of all the profound collective challenges that everyone is currently experiencing, the myositis community has the added personal crucible of managing a chronic disease for which there is no cure. Despite the best efforts of…
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By Mike Bradbury Having lived with IBM for more than 20 years, I have a few suggestions for making the journey easier. [Editor’s note: Most of these tips are good advice for anyone, even if you don’t live with a chronic health condition.] 1. Do your chores. As best you can, continue your normal routine,…
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