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May 8, 2013

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May 8, 2013

I have had Myositis for over 14 years. About 8 years a go was diagnosed with IBM. Without the help and support of TMA I believe our disease would be in the dark ages in terms of knowledge and research. In addition to being a patient, I am also active as a fund raiser and support group leader.

John schell

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

May 8, 2013

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May 8, 2013

I have had DM for over 30 years. When TMA began it was the only source of information available to me. I have since joined my local KIT (Keep In Touch) and have found it a lifesaver. To be able to meet with other people with myositis and share our experiences and joys is so important. Their website, conference and newsletter do so much to educate paitents and their families as well as the general public and the doctors who treat us.

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How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

May 2, 2013

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May 2, 2013

I was originally told about TMA 5 years ago by my Pilates teacher, who was working on getting me stronger after my diagnosis with dermatomyositis and trying to learn about the disease to help me. I am so thankful she found it! I have since joined TMA, attended four conferences and made many friends. The small staff does an amazing job with its limited resources. The highly educational yearly conferences have been overwhelmingly appreciated by all attendees, with the added bonus of a very committed and knowledgable medical advisory board (who are actually involved in research and patient care, not just names on a list). The website not only has a wealth of information, but has access to webinars and a community forum where individuals can pose questions and get answers and tips. And due to the many support groups (called KIT - Keep In Touch groups), nearly anyone in the country can find a local outlet to meet others with the same condition, a HUGE deal with such rare conditions. It has made a big difference in my life.

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How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

April 30, 2013

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April 30, 2013

The Myositis Association is the only organization in the world that hosts an annual conference JUST FOR myositis patients. They provide direct support as well as organizing support groups for the myositis community. I have Inclusion Body Myositis and I have learned more from TMA than from my local doctors. The doctors on their Medical Advisory Board actually answer emails!

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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