TMA founder Betty Curry: A force to be reckoned with

May 13, 2024May 20, 2024 Category: TMA Highlights

By Theresa Curry

She was a successful artist, both critically and financially, she started businesses, taught others how to start businesses, brokered real estate, developed high-end subdivisions, and owned a business management firm. All these were minor battles, mere projects compared to the challenges Betty Curry faced at 64 years old when she was diagnosed with inclusion body myositis (IBM).

Betty knew from her family history to expect something like this: her father had spent part of his life in a wheelchair, and her brother had already been diagnosed with IBM. She had suspected that she too had the disease, and she was right. What’s worse, there was no treatment, no cure, no information, and no support.

Described by those who knew her as “a force of nature,” Betty refused to accept the words of a well-meaning professional who told her that information about her disease was available but “too difficult” to understand. These were fighting words to the woman who had built her life and career on arming herself with knowledge, then charging forward.

Betty was sure that if she could understand more about her disease, she would make better decisions about her future, so she put her formidable energy and intelligence to the task of learning as much as possible. She was also determined to share her knowledge with other patients whose struggle was made harder by ignorance and confusion by starting an organization to provide support and education. She called her fledgling nonprofit the Inclusion Body Myositis Association, or IBMA. 

From the National Organization of Rare Disorders (NORD), she got the names of 15 IBM patients who had registered with the organization, and she wrote to every one of them. Their replies saddened her but strengthened her resolve. Some of them had been diagnosed for more than ten years, and still they knew nothing about their disease or their future. “I found this intolerable,” Betty said in an interview. “They were simply not getting the information they needed.”

Betty soon had an opportunity to meet others like herself. She became part of an ongoing IBM study at the National Institutes of Health and made frequent trips from her home in Virginia’s Shenandoah Valley to the NIH clinic in Bethesda, MD, a couple of hours away.

Her son, Mike—who had already been diagnosed with an early-stage myopathy—also joined the study, which required overnight stays. They soon realized that they were in the midst of potential members of IBMA for days at a time. In hospital gowns and slippers, the mother-and-son team padded from hospital room to hospital room, pitching the idea of banding together for support, education, and eventually better treatment for IBM patients.

A handful of NIH doctors studying IBM volunteered to be on the medical advisory board for Betty’s new organization. Recognized as the world’s foremost authorities on the disease, their presence lent credibility to the new association, and they sent colleagues and patients to IBMA.

From the small group of members, some leaders emerged, and a board of directors was formed. It was time for the first publication, the IBMA “OutLook,” written in Betty’s warm, confident, and humorous style. “This organization won’t cure you,” she told her subscribers in the Spring, 1993 edition. “But its purpose will surely provide an exchange of information, some of which will be of use to you.”

As she became aware that people with other forms of myositis needed education and support, she merged IBMA with a national nonprofit serving people with dermatomyositis, polymyositis, and juvenile myositis. To accommodate these changes, IBMA became the Myositis Association of America (MAA) in 1996.

Until she retired in 1998, Betty continued dispensing evidence-based information, growing MAA’s patient support network, creating professional collaborations, and lobbying for more awareness and more research from her home and subsequently an office in Harrisonburg, Virginia. Her efforts were carried forward by other devoted advocates, evolving into The Myositis Association we know today.

During Myositis Awareness Month, TMA recognizes Betty’s vision and determination in creating this organization and nurturing the dream of a world without myositis. Betty passed away in August 2014. We honor her memory.

Theresa Curry (no relation to Betty) served as Communications Director for TMA for 20 years until her retirement in 2016. We thank her for these reflections.