MDA DISABILITY ADVISORY BODY
CELEBRATES 15TH ANNIVERSARY
TUCSON, Ariz., Dec. 19, 2006 —
The Muscular Dystrophy Association’s
National Task Force on Public Awareness
is an important part of MDA’s
ongoing efforts to build a better and
brighter future for people with neuromuscular
diseases. Entering its 15th year, the
Task Force takes a leading role in raising
awareness of MDA’s efforts to
assist people with disabilities.
Established in 1992, the advisory body
consists of 12 professionals and community
leaders, each affected by one of the
neuromuscular disorders in MDA’s
program. They serve as volunteer consultants
for MDA.
The members, including educators, lawyers,
writers and engineers, help educate
the public about MDA’s lifesaving
research and services programs, through
public appearances, speaking engagements,
media interviews and public service
announcements at the local, regional
and national levels.
They also advise MDA on matters of
importance to people with disabilities
such as medical care, insurance, independent
living, personal assistance services
and pertinent legislation.
Most recently, in late October the
group wrote to U.S. Secretary of Health
and Human Services Michael Leavitt urging
that he delay implementation of a new
policy that would have limited the types
of wheelchairs provided by Medicare
and reduced Medicare reimbursement rates
for wheelchairs. Their input was a key
factor in Leavitt’s decision to
alter the policy to take into account
the impact of progressive conditions
such as neuromuscular diseases.
The members of the Task Force’s
steering committee are: William W. Altaffer,
an attorney in Tucson, Ariz.; Jan Blaustone,
a teacher and writer in Nashville, Tenn.;
Mike Neufeldt of New Berlin, Wis., who
works in interactive communications
for the Harley-Davidson Motor Company;
and Christopher Rosa of Flushing, N.Y.,
University Director for Student Affairs
at the City University of New York.
Other Task Force members are: Marilyn
J. Cooper, Northridge, Calif., counselor;
Mario Damiani, Arlington, Va., attorney;
Nicholas A. Johnson, Waltham, Mass.,
engineer; Elio Navarro, Tampa, Fla.,
software developer; Rob Roozeboom, Sheldon,
Iowa, motivational speaker; Matthew
Schuman, Greeley, Colo., reporter; David
A. Sheffield, Silsbee, Texas, attorney;
and Angela Wrigglesworth, Houston, teacher.
The group has communicated to governmental
and policy leaders its position on issues
ranging from national health care to
the enforcement of the Americans with
Disabilities Act. The Task Force has
taken a stance on legislation such as
the ADA Notification Act, the Inclusive
Home Design Act, funding for Medicaid
and long-term home health care services,
and support for family caregivers.
The Task Force’s mission is supported
year-round by local MDA task force groups
nationwide that help promote independence,
awareness and leadership for the people
MDA serves.
Notably, a year after the Task Force’s
creation, in 1993, MDA became the only
national voluntary health organization
to receive the National Council on Disability’s
Outstanding Service Award for increasing
public awareness of the capabilities
of people with disabilities.
MDA is working to defeat more
than 40 neuromuscular diseases through
programs of worldwide research,
comprehensive services,
and far-reaching professional and public
health education. The Association’s
programs are funded almost entirely
by individual private contributors.
For information about MDA, visit www.mda.org.
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