Betty Curry of Harrisonburg VA, has brought knowledge and support to thousands of people who have myositis, rare and often misdiagnosed degenerative muscle diseases that cause weakness and crippling.

Curry, a realtor and developer, was 64 years old when she was diagnosed with Inclusion Body Myositis in 1992. When she asked for resources that would help her understand the disease, her doctor told her that no information that she could understand was available.

Those devastating words fueled Curry's fighting instincts. Starting in a home office, she founded what is now MAA, the Myositis Association of America. Her first step was to work through the National Organization of Rare Diseases to contact others who had been diagnosed with the disease. She then began compiling research and contacting experts who could add to her growing data base of useful information.

Despite significant risks to her own health, Curry worked 12 hours a day, 5-to-6 days a week to build the organization, using an electric scooter for mobility. She received no salary and used her own resources to help pay the costs of building public awareness of the disease and bringing knowledge to patients and physicians battling the disease.

Today, MAA has a medical advisory board of world-class scientists and eight paid staff who solicit research funding and produce a web site, a newsletter and annual conferences, all providing inspiration, information and hope to thousands.

MAA has sparked an explosion of interest in research, resulting in treatments that are already available and new ones that are in development. In 2002, MAA awarded $900,000 to scientists doing myositis research.

Thanks to Curry's persistence and her investments of time, energy, and money, people with myositis no longer have to be told there’s no information available that they can understand—there’s not only good information, there are support services and the prospect of improved treatments.

Betty Curry has retired from MAA due to further health complications, but her organization continues to thrive, bringing a medical condition and the people it affects out of the dark ages.