Marianne passed away on May 2, 2024, from complications of SRP necrotizing myopathy and interstitial lung disease. On the eve of the one-year anniversary of her death, we offer this…
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The full-time job of living rare
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…
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We Care for Rare Summit: Celebrating myositis science and patient stories on Rare Disease Day
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….
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My medical binder
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,…
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Unshakable optimism
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…
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