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Terry57

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3 reviews

Review for The Myositis Association, Alexandria, VA, USA

Rating: 5 stars  

I am a spouse of a person with Myositis. We have benefited greatly over the years as a source of information, inspiration and support as we deal with this life-altering, debilitating disease currently without a cure or treatment. The Myositis Association (TMA), with its Medical Advisory board of doctors and researchers around the world, provides us with hope with its funding of research grants and fellowships. TMA provides a network of support groups throughout the country, and around the world, that also aids and supports its members. In addition, its annual conference, attended by over 500 patients and caregivers provides a forum for dialogue among patients, care-givers, and the medical community. TMA is our life-raft in a sea misinformation and personal disease-related stress.

Role:  Client Served
 

Review for The Myositis Association, Alexandria, VA, USA

Rating: 5 stars  

TMA continues to provide valuable information and support to me as I navigate this rare disease that afflicts my wife. As a caregiver the relationships that I have made via my association with TMA have been invaluable. The annual patient conferences offered by TMA to its membership provide the latest information on treatments, research efforts, and coping strategies. These conferences also provide an avenue for personal contact with others with the various forms of the disease as well providing opportunities to meet with the medical community members specializing in Myositis.

Role:  Client Served
 

Review for The Myositis Association, Alexandria, VA, USA

Rating: 5 stars  

My wife was diagnosed with Inclusion Body Myositis in 2008, shortly after we had both retired and had begun planning an active retirement with bicycles, kayaks and travel. The Myositis Association was a great help in adjusting to that terrible news by providing resources, support group contacts and other information. We continue to be heartened and hopeful that the research supported by TMA will bring a cure, or at least relief, from this disease. We look to the TMA website almost daily for supportive information.

Role:  Board Member