Alicia Lowther’s husband Dan found out after years of misdiagnoses that he had inclusion body myositis (IBM). It was a shock to both of them. “Dan decided he was going…
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Slowing IBM progression
by Joe Feidt I was having trouble swallowing. That’s how it started. It’s now been 11 years since I heard my neurologist say, “Joe, I’ve got good news and bad…
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Discovering priorities
An IBM patient-led research project Editor’s note: This is part one of a three-part series of articles from Dr. Kevin Austin, an Adjunct Professor in the Health Futures Institute’s Personalised…
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A tribute to Marianne Moyer
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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