The Myositis Association celebrates 25 years serving those who have myositis.
Founded in 1993 by Betty Curry who was diagnosed with IBM, the Inclusion Body Myositis Association was formed to draw attention to the rare disease myositis and work toward a cure. While the IBM organization was developing, there was another organization formed in Massachusetts for those with dermatomyositis and polymyositis, named the National Myositis Association. Realizing the power of having a single voice for all of those who have myositis, the two organizations merged in 1996 and the Myositis Association of America was formed.
MAA – as it was known – continued to slowly develop over the next 5 years until 2001 when a significant breakthrough occurred. A librarian in Canada, who was a widow, passed away and left nearly $2 million in her will to be given to the Myositis Association of America, a very generous gift that enabled MAA to begin to fund research into all forms of myositis.
Recognizing the value of being located near other health charities and the opportunities Washington, DC offered for increased exposure for MAA, the organization’s office moved to Washington in 2003and was renamed The Myositis Association.
TMA blossomed over the next several years. Its Annual Patient Conference moved around the country year-to-year and attendance went from 175 people in 2003 to over 500 in 2017. Attendees and their caregivers (we call them care partners) were happy to meet others with the disease and share information.
TMA’s Medical Advisory Board expanded to include researchers from outside the U.S. in addition to those in America. Soon the 20-member Medical Advisory Board had nearly one third its members from countries other than the U.S. And, to increase visibility of myositis in Washington, Congress was persuaded to declare September 21st National Myositis Awareness Day.
The organization reached new heights when a donor in 2007 offered to match all research donations that year up to a total of $500,000. The Matching Research Challenge campaign, as it was known, produced a total of $600,000 in additional research funds. Shortly thereafter, TMA arranged for its largest research grant to date — $800,000 for the follistatin gene therapy trial to be conducted by Dr. Jerry Mendell at Ohio State University. As the research program grew, so did bequests received from estates of those who had myositis. By 2017, TMA funded nearly $7 million of myositis research.
In 2011, membership dues were eliminated to remove any financial barriers for patients needing information and assistance to cope with their form of myositis. A new program — Visiting Professors – was soon after implemented to educate young medical students about myositis, and TMA published its first ever Physicians Guide to Myositis, distributing over 7,000 copies of the Guide for patients to give to their treating physician.
For increased awareness of myositis, TMA decided in 2015 that there would now be an awareness month – May – instead of a single day in September to bring attention to the disease. In 2016, TMA hired its first Research Director. The next year, TMA expanded its Medical Advisory Board to 24 members to allow for more international member participation.
All of the success, patient support and research funding TMA has accomplished over the past 25 years would not have been possible without the dedication and strong encouragement provided by those who have suffered with the disease but remain committed to finding a cure.
To find out how you can help celebrate TMA’s first 25 years and support our efforts, click here.