By Paula Eichenbrenner, TMA Executive Director. “Strength in numbers” is a cliche because it’s true, and every year, EveryLife Foundation for Rare Diseases assembles nearly 1,000 rare disease advocates during hashtag#RareDiseaseWeek. The Myositis Association is showing our stripes with advocates – myositis patients, care partners, and clinicians – from seven (!) states here in Washington…
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If you have been diagnosed with a rare disease and you can’t work because of the symptoms of that disease you may qualify for Social Security disability benefits. As long as you expect that you won’t be able to work for at least 12 months you can file an application for Social Security disability benefits….
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By Tesse Muldoon Myositis has had a profound impact on my life in many ways. After seven years of odd skin rashes and a number of other autoimmune conditions, I was diagnosed with cancer-associated dermatomyositis in 2017, and it drastically changed my path. Before becoming disabled, I was a certified nursing assistant (CNA) and was…
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On Monday, February 10, 2025, Rich DeAugustinis, Vice Chair of TMA’s Board of Directors, testified to the Georgia Senate Committee on Health and Human Services in support of the Georgia Hope for Patients Act (S.B. 72). This proposed legislation, sponsored by Georgia Senator Matt Brass, will allow patients who have severely debilitating or life-threatening illnesses to…
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By Paula Eichenbrenner, TMA Executive Director and Laurie Boyer, TMA Board of Directors Chair At TMA, we believe research is the key to better treatments and a brighter future for those living with myositis. Our mission includes an important commitment to “fund innovative myositis research.” In fact, TMA has invested nearly $10 million into research…
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