About

The mission of The Myositis Association is to improve the lives of persons affected by myositis, fund innovative research, and increase myositis awareness and advocacy. Our programs and services provide information, support, advocacy, and research for the myositis community.

History

The Myositis Association of America (MAA) was created by Betty Curry in March 1993, as the Inclusion Body Myositis Association (IBMA), a nonprofit corporation. The National Organization of Rare Disorders (NORD) provided the names of 16 patients who became the initial members.

Extensive outreach through the medical community and later through the Internet touched off enormous growth. As of January 1, 2003, the name changed to The Myositis Association (TMA) to include the growing membership on every continent. The list of 16 patients has since grown to over 14,000.

Since then, scientists, practicing physicians, and other medical professionals have supported the organization through the Medical Advisory Board. This group provides medical information to staff and patients and guides the TMA research program. The research program, begun in 2002, has now funded nearly $7 million in myositis research.

The first conference was held in 1995 and is now an annual event with a panel of medical experts, peer counseling, sessions on coping skills, support group training, and time to meet other patients and their families.

Commended by the National Organization for Rare Diseases, the Myositis Association's dedicated leadership and solid track record in successfully uniting and serving the myositis community make us uniquely qualified to best serve our constituents now and into the future. TMA organizes national conferences featuring world-renowned speakers, and produces numerous newsletters, which provide education, and articles that enhance the lives of individuals with inflammatory myopathies.

About Myositis:

The disease is highly variable and has been classified into several forms, including: 

  •  Dermatomyositis (DM)
  •  Polymyositis (PM)
  •  Necrotizing Myopathy (NM)
  •  Sporadic Inclusion Body
  •  Myositis (sIBM)
  •  Juvenile forms of Myositis (JM)

Symptoms of weakness, swelling, and muscle damage often appear gradually. Long before patients are diagnosed, they may have trouble getting up from a chair, climbing stairs, or grasping objects with their hands. Patients may fall, find it difficult to reach their arms up, have difficulty swallowing, or other symptoms. There is No Cure. These chronic, life-long conditions can be treated but not cured.