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.
Ways to make it better...
If I had to make changes to this organization, I would...
Continue doing what it is doing.
When was your last experience with this nonprofit?