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 Iazsmin Bauer Ventura, MD On November 1, 2024, Dr. Ventura offered the following words at The First Annual Meredith C. Thomas Trivia Fundraiser, a benefit for TMA’s Meredith C. Thomas Memorial Fellowship fund. This research fellowship is currently recruiting a physician scientist to study antisynthetase syndrome and myositis interstitial lung disease. I am a…
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The path of discovery is not often a straight line. Most times it winds around from one question to another. Sometimes the trail just stops until someone else with a vision comes along and imagines where that dead end can go. When Dr. Julio Huapaya arrived at the NIH for a fellowship in pulmonary and…
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Patients and patient organizations play a pivotal role in myositis research. Those who live with the disease are, in fact, the experts on myositis, and increasingly they are actively involved in academic research, national and international myositis research organizations, industry-sponsored patient advisory councils, and government supported research initiatives. The value of this expert insight is…
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No one needs to tell someone with myositis that the disease brings with it a great many physical, mental, and financial challenges. The debilitating symptoms significantly affect one’s quality of life (QoL), yet the impact of these burdens has not been documented in the literature. Until now. Recently, a team of researchers, led by TMA…
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