Before the Labor, Health and Human Services Subcommittee of the Senate Appropriations Committee
Testimony of Christopher Rosa, Ph.D. - Biography
02/27/01
Mr. Chairman, Senator Harkin, and members of the Subcommittee, I feel that I am uniquely qualified to comment upon the concerns of American families affected by the muscular dystrophies because in 1976, the lives of members of my family were forever changed by my diagnosis of Becker MD. When my condition was diagnosed, very little was known about the muscular dystrophies. Doctors offered families little hope and prepared them for lives of diminished opportunities and the inevitable premature loss of loved ones.
However, over the past three decades, thanks to the work of the Muscular Dystrophy Association, the prospects for people with muscular dystrophy have improved dramatically. Through MDA's national network of clinics, people with MD are receiving the preventative health care and assistive technologies necessary for them to live more productive lives. Indeed, thanks to MDA, I was able to graduate from college, go on to graduate school, earn a doctorate in sociology, build a rewarding career, and dream of starting a family of my own. Moreover, through MDA's worldwide program of neuromuscular disease research, we have moved to the very threshold of treatments and cures.
While this progress is a source of tremendous hope for families affected by muscular dystrophy, it is also a source of great tragic irony. As those of us who have been empowered to pursue independence by research wait desperately for effective treatments and cures, the ravages of muscular dystrophy continue to exact tremendous human and social costs. Muscular dystrophy will continue to weaken vibrant, productive people, ultimately rendering them unable to work and forcing them to be dependent upon disability benefits. It will continue to cut down talented, contributing members of our society in the prime of their lives, leaving gaping holes in the fabric of love and support that binds our families together. Every day without treatments for muscular dystrophy costs us the very lives of dozens of bright, talented people.
We therefore propose that you respond to the urgent need of thousands of American families by increasing NIH's projected $19.9 million annual allocation for muscular dystrophy research by an additional $100 million.
Thank you.
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Read the other testimonies, [Jerry Lewis] [Dr. Leon Charash] |
