In the late 1940s, Paul Cohen, a prominent New York businessman who had muscular dystrophy, helped found the Muscular Dystrophy Association. Since MDA 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 efforts to ensure people with disabilities enjoy equal rights and opportunities.

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

As individuals, task force members represent MDA to the general public and the news media. Task force members also are highlighted in MDA educational materials, including video and print public service announcements.

To learn more about the MDA National Task Force nomination process, please contact your local MDA office or email advocacy@mdausa.org.

In keeping with its three goals of independence, awareness and leadership, the MDA National Task Force has communicated its position on legislative and policy matters, including:

• ADA Notification Act
• Air carrier legislation
• ALS Treatment and Assistance Act
• Americans with Disabilities Act
• Charitable Giving Relief Act
• Family Caregivers Enumeration Act
• Funding for the Social Services Block Grant
• Homebound Clarification Act
• Inclusive Design Act
• Increased funding for National Institutes of Health's muscular dystrophy research
• Long-term home health care
• Medicaid funding
• Medicaid's proposed benefit reduction regarding powered mobility devices
• National health care plan
• Personal assistance services
• Roosevelt Memorial

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 diseases who are leaders in their communities. The task force 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 advise the Association on matters of importance to people with disabilities such as medical care, insurance, independent living, personal assistance services and pertinent legislation. It also fosters greater awareness of MDA's contributions to people with neuromuscular diseases, and the Association's central role in assisting those it serves to live rewarding, productive lives that are fully integrated into mainstream American society.