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June 9, 2013

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June 9, 2013

I was diagnosed with inclusion body myositis (IBM) five years ago. It took almost two years to obtain a correct diagnosis, because it is such a rare disease, and the average practitioner does not come across it. The Myositis Association (TMA) is the only credible organization in the country that is devoted solely to assisting patients afflicted with myositis and their family and friends. TMA is transparent, posting all relevant information about its operations, including financial information, and it operates successfully on a shoestring. It funds medical research, patient and community outreach, education, and non-political advocacy.

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Continue doing what it is doing.

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When was your last experience with this nonprofit?

2013

May 2, 2013

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May 2, 2013

My husband was diagnosed with inclusion body myositis over 20 years ago. TMA was the only source of information at that time.(pre internet) We have watched it take on more in the way of creating awareness and advocacy for these diseases. In recent years the amount of funding for research and the grants given are a great step forward toward understqnding and curing this rare disease. My family believes so strongly in TMA that we fundraise every year.

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Definitely

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Definitely

When was your last experience with this nonprofit?

2013

May 1, 2013

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May 1, 2013

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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Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

April 30, 2013

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April 30, 2013

TMA was very valuable to me when I was first diagnosed with IB Myositis in 2009. I had many questions about the progression of the disease and what patients were still capable of doing. The website was very helpful in answering many of these questions. The support provided in the way of articles on research for a cure are very encouraging also.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

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