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June 26, 2013

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June 26, 2013

My wife suffers from Inclusion Body Myositis (IBM). Through membership in TMA and in our local support group we have learned so much about this rare disease that we had never heard of prior to her diagnosis. As a volunteer member of the TMA board of directors I am aware of how the scarce resources of the organization are used and, in my opinion, the organization is very well run. The annual patient conference is a wealth of information and support for myositis patients and caregivers. The quarterly newsletters and random e-mails are full of useful information directed at this rare disease.

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Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

May 1, 2013

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May 1, 2013

My father was diagnosed with IBM about 19 years ago, and he passed away from complications 2 years ago. During the last 10 years of his life The Myositis Association was the only group that was able to give him information about his disease. He was always so thankful for the information he received in their newsletters and online web site. He also found comfort in knowing he was not alone in the world suffering from this rare disease. My siblings and I went to The Myositis Association Conference the year my father died and we met so many wonderful people who understood what we had been through as a family. I will continue to contribute to this great organization and volunteer with them as they try help all of those who suffer from myositis diseases. Their annual conference is a wonderful gathering for those who are afflicted with these diseases, and their caregivers.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

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