My Nonprofit Reviews

It is frightening to have a rare disease! Where to get help? How to find a doctor? What to tell your family? These are questions a myositis patient has when first diagnosed. And when they find TMA, many of those questions are answered and all of a sudden they don't feel so alone. I was diagnosed in 1999 and thought I knew all about my form of myositis. But thanks to one of TMA's medical board doctors, I discovered that in reality I had a different form and it needed a different treatment. What a comfort to know this organization is supportive of us, the individual patients as we deal with our disease.

Finding the resources to help me deal with my rare disease, Immune Mediated Necrotizing Myopathy, is not easy! Luckily, TMA's medical advisory board is unbelievably available for advice and consulting. And when TMA holds its annual patient conference, being able to actually meet and talk with these world-renowned medical experts is as they say 'priceless'. I don't know what I'd do if i had to face my disease without TMA's help.

I joined TMA because I have the rare muscle disease, Polymyositis. I didn't know another soul with the disease and didn't know what to expect from joining TMA. Since 2006 I have been leader of a local support group, initiated by TMA. We receive great support for individuals, their families and the group in general. Now I know, as do our group's members, that I am not alone with my disease. I've found great doctors, and met many others, all through my membership in TMA. I am a regular donor and wish I could give more. I especially appreciate the annual patient conference for its informative sessions and fellowship opportunities.

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I've been a member of and donor to TMA for about 10 years. When I was diagnosed with PM my doctors called it a 'rare' disease, and offered no help other than massive amounts of medications. I contacted TMA and got support and factual information that helped not only me, but my family to understand and cope with my disease. I believe in their efforts to support patients and their families. I have been pleasantly surprised at how their Medical Advisory Board doctors take the time to talk to me as an individual (at the annual conferences). And I applaud that TMA has granted over $3 million to research myositis diseases.

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