Rare Disease Week on Capitol Hill

TMA is very excited to be participating again Rare Disease Week on Capitol Hill  with our partner, The Every Life Foundation (February 24-29).  Last year, we were able to secure 5 meetings with legislators, attended a briefing, had a tour of the clinic at NIH and lunch with NIH myositis researchers.  This year looks to…

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New mouse model for sIBM

The Myositis Association (TMA) is excited to announce the groundbreaking development of the first humanized mouse model for sporadic inclusion body myositis (sIBM) achieved through TMA’s innovative Pilot Research Funding Program.  With the generous funding of The Myositis Association’s Pilot Research Grant, Dr. Thomas Lloyd, a member of TMA’s Medical Advisory Board, and his research…

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2019 Annual Patient Conference a success

TMA’s 2019 Annual Patient Conference was another amazing event! Each year the Conference provides those who live with myositis the opportunity to gather to learn about their disease as well as to meet and share experiences with others who understand their challenges. Nearly 500 people attended from all over the US as well as folks…

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Experts responded

Before the March meeting of the Global Conference on Myositis 2019 in Berlin, Germany, TMA asked its members to submit questions they would like to pose to the researchers and clinicians gathered at this meeting. You sent us nearly 80 questions, and we submitted them to the program organizers, seeking answers. A number of myositis…

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Update on Ig products in short supply

The FDA has issued a statement about the availability of immunoglobulin products, which many myositis patients depend upon for treatment of their disease. The statement says, in part: ” In the setting of the increased demand for Ig, other factors that ordinarily might not impact availability may have a greater effect. These could include uneven…

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