On February 27, 2001, MDA National Chairman Jerry Lewis testified before a U.S. Senate subcommittee to urge legislators to increase National Institutes of Health's funding for muscular dystrophy research by $100 million annually. He was joined by a distinguished team of MDA officials and individuals served by the Association, including Leon Charash, M.D., Chairman of MDA's Medical Advisory Committee, and MDA National Task Force member Chris Rosa, Ph.D., both of whom also serve on MDA's Board of Directors.
The Association is embarking on a sustained advocacy effort in Washington, D.C. because, through MDA-funded basic research, scientists are now at the threshold of finding treatments and cures. The therapeutic research and clinical trials now required of scientists, however, are extraordinarily expensive and far exceed MDA's resources. Therefore, the culmination of MDA's quest for treatments and cures depends upon an all-out effort by our government to assist in funding the required vital research.
It should be underscored that MDA has never before sought government funding for the Association, and that policy was not changed. Rather the purpose of Mr. Lewis' testimony is to initiate a strong push for more federal monies to go directly to scientists who are making progress in muscular dystrophy research.
The following letter was signed by members of the MDA National Task Force Steering Committee and mailed on February 27, 2001, to addressees as indicated.
Dear Senator Specter, Senator Harkin and Members of the Subcommittee on Labor, Health, Human Services, Education and Related Agencies:
We, the members of the MDA National Task Force on Public Awareness, a voluntary advisory group of individuals affected by neuromuscular diseases, fully support the position taken by MDA National Chairman Jerry Lewis in seeking an annual increase in National Institutes of Health (NIH) spending for muscular dystrophy research in the amount of $100 million.
For decades, MDA has funded basic neuromuscular disease research which has brought us to the threshold of cures. However, the costs of the clinical trials and therapeutic research now required to find treatments and cures far exceed the $19.9 million NIH currently has allocated for that purpose. Moreover, it is inequitable for the NIH to appropriate annually only some $80 per individual with muscular dystrophy as compared to the considerable annual NIH appropriations for individuals with other life-threatening diseases.
MDA gives help and hope to individuals with muscular dystrophy by providing vital services and funding worldwide research. At this crucial time, however, when cures are within the grasp of brilliant and dedicated scientists, our government must join in this lifesaving mission.
We urge you to make treatments and cures a reality for those of us affected by neuromuscular diseases.
The Members of the Steering Committee of the
MDA National Task Force on Public Awareness
/s William W. Altaffer
/s Jan Blaustone
/s Shelley C. Obrand
/s Chris Rosa, Ph.D.
Muscular Dystrophy Association — USA
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Chicago, Illinois 60606
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