Circa 2006
Dear ABILITY Readers,
Our nation is on the brink of amazing breakthroughs offering new hope to those with paralysis, thanks to efforts led by the National Institutes of Health and the Christopher Reeve Paralysis Foundation. But there’s a problem.
Currently, paralysis research in the United States is per formed across multiple disciplines with no effective means of coordination and collaboration. As a consequence, time, effort and valuable research dollars are used inefficiently. In addition, critical research results, best practices and information about clinical trials are not disseminated to individuals and families affected by paralysis.
To address these unacceptable bottlenecks, I introduced the Christopher Reeve Paralysis Act (CRPA) in 2002. My bill encourages coordination of research to prevent redundancies, which will hasten discovery of better treatments and cures. The CRPA has four components that support and enhance paralysis research, rehabilitation and quality of life programs:
1) It expands research on paralysis at the National Institutes of Health;
2) It builds on research to enhance daily function for people with paralysis, including a Clinical Trials Network to measure effectiveness of certain rehabilitation tactics;
3) It works with the Centers for Disease Control and Prevention to improve the quality of life and long-term health status of persons with paralysis and other physical disabilities:
4) It utilizes the Veterans Health Administration facilities to improve paralysis research by tracking data within the world’s largest system of hospitals.
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Some two million Americans are living with paralysis of the arms or legs. One of them is my nephew, Kelly, who has had quadriplegia for 26 years, since an accident on an aircraft carrier during his time in the Navy Whenever talk with Kelly, he asks me whether we are making gas in passing the Christopher Reeve Paralysis Act.
The good news is that we have strong bipartisan sup on In the last Congress, 28 Senators and 69 Representatives signed on to the bill The bad news is this is not enough. We need majorities in both houses. We you and I have lots more work to do.
In his final years, Chris Reeve fought hard to try to pass CRIA, as did his wonderful wife Dana, right up to her death in March Obviously, Chris wanted a cure for spinal cord injury. But he was not a Johnny-One Note He spoke up passionately for all people living with disabilities. He spoke up for Parkinson’s and ALS research. Chris and Dana were also huge supporters of research at the National Institutes of Health. When I joined with Senator Arlen Specter to double funding for NIII between 1908 and 2003, we had no better supporters and allies than the Reeves.
Hut today, that success seems like ancient history. In President Bush’s proposed budget for next year, 18 of the 19 institutes at NIHI would have their budgets cut. That’s not financing a war on paralysis. I fear it is financing a retreat.
America can do better than that. We can begin by giving NIH a substantial funding boost, and by making spinal cord research a top national priority.
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Chris Reeve wanted a cure in his lifetime. But he was also fighting for others, including all those children he met with spinal cord injuries. He was fighting for a cure in their lifetimes. And so must we.
As long as there is hope for a cure to spinal-cord injuries, Parkinson’s, ALS and other such diseases, we have an unfinished agenda.
As long as paralysis research remains scattered and uncoordinated, and less effective than it should be, we have an unfinished agenda.
As long as NIH is starved for funding, unable to pursue important new directions in paralysis research, we have an unfinished agenda.
And if we have just half of Chris and Dana Reeve’s courage, we can complete this agenda I can think of no better way to honor their memory than for Congress to pass the Christopher Reeve Paralysis Act now, in this Congress.
Sincerely,
Senator Tom Harkin
