Since the Muscular Dystrophy Association began, adults with neuromuscular diseases have been among its leaders as chapter officers, members of the Board of Directors and advisers. Under their guidance, MDA has educated the public about living with disabilities and supported all efforts to provide people with disabilities with equal rights and opportunities.

In 1992, MDA established the National Task Force on Public Awareness. This advisory body is composed of individuals from across the country who are leaders in their communities and achievers in many professional fields. The group — consisting of adults affected by neuromuscular diseases in MDA's program — serves as volunteer consultants for the Association, particularly on issues of interest to people with disabilities.

In keeping with its three goals of independence, awareness and leadership, the national task force helps inform the public about MDA's achievements in its groundbreaking research and comprehensive services program in behalf of more than a million Americans affected by neuromuscular diseases. The group also has communicated its stands on such matters as: the national health care plan, the Americans with Disabilities Act, Medicaid funding, personal assistance services, the Roosevelt Memorial, the ALS Treatment and Assistance Act, the Charitable Giving Relief Act, the Family Caregivers Enumeration Act, air carrier legislation, long-term home health care, ADA Notification Act, funding for the social services block grant, seeking an increase in National Institutes of Health spending for muscular dystrophy research , the Homebound Clarification Act, the Inclusive Design Act and Medicaid's proposed benefit reduction regarding powered mobility devices.

As individuals, task force members represent the Association to the news media. Members have appeared on network and syndicated television programs, and have been interviewed by national, regional and local print and radio media. Task force members are also highlighted in MDA educational materials, including video and print public service announcements.

Following the national task force's example, local task forces have been formed in many of MDA's 160 chapters across the country.

In 1993, MDA became the only national voluntary health organization to have received the National Council on Disability's Outstanding Service Award for increasing public awareness of the capabilities of people with disabilities.

Mission Statement

The MDA National Task Force on Public Awareness is a voluntary advisory body of adults with neuromuscular disorders who are leaders in their communities. It was organized to promote
the goals and programs of the Association and to provide MDA with feedback relating to the needs of those it serves.

The Task Force's mission is to foster greater awareness of MDA's contributions to people with neuromuscular diseases as well as the Association's central role in assisting those it serves to live rewarding, productive lives, fully integrated into the mainstream of American society. It also advises the Association on matters of importance to people with disabilities such as medical care, insurance, independent living, personal assistance services and pertinent legislation.