Millions of Americans Living with Paralysis Provided Hope with Introduction of Christopher Reeve Paralysis Act of 2003

5/7/2003

From: Maggie Goldberg, 800-225-0292 ext. 115, Colleen Dermody, 202-887-0500 ext. 18, both for the Christopher Reeve Paralysis Foundation

WASHINGTON, May 7 -- Christopher Reeve came to Capitol Hill today to voice his support for legislation that could significantly improve the quality of life for millions of Americans living with paralysis. The Christopher Reeve Paralysis Act of 2003 is first-of-its-kind federal legislation that calls for new funding to advance research, rehabilitation and quality of life programs that will benefit persons living with paralysis, their caregivers and their families.

If enacted, this bipartisan legislation would authorize additional funding for paralysis research at the National Institutes of Health (NIH) through the National Institutes of Neurological Disorders and Stroke (NINDS), as well as expand rehabilitation research activities through the National Center for Medical Rehabilitation Research (NCMRR). In addition, the legislation would authorize the CDC to carry out projects and interventions to improve the quality of life and the long-term health of persons living with paralysis and other physical disabilities, and would expand research programs on paralysis within the Veterans Health Administration (VHA). Lead co-sponsors include U.S. Reps. Michael Bilirakis (R-Fla.), Sherrod Brown (D-Ohio) and U.S. Sens. Tom Harkin (D-Iowa) and Arlen Specter (R-Pa.).

"I am honored and humbled to have my name associated with such a powerful piece of legislation," said Christopher Reeve, chairman of the Christopher Reeve Paralysis Foundation. "The passage of this bill will send an unprecedented message -- the issues of research, rehabilitation and quality of life are paramount to improving the lives of those living with disabilities."

The bill has four components:

1) It advances cutting-edge medical research at the National Institutes of Health (NIH) through the establishment of grants to a consortia of research centers;

2) It establishes a Paralysis Clinical Trials Network and will design rehabilitation interventions for people with paralysis through the National Center for Medical Rehabilitation Research (NCMRR);

3) It calls for The Centers for Disease Control and Prevention (CDC) to carry out projects and interventions to improve the quality of life and long-term health status of persons with paralysis and other physical disabilities. CDC programs will focus on caregiver education, physical activity, prevention of secondary complications, and will coordinate services to help remove environmental barriers; and

4) It expands basic rehabilitation and health sciences research through the activities of the Veterans Health Administration. A Paralysis Research, Education and Clinical Care Centers (RECCs) and Consortia will be established to focus on basic paralysis biomedical research, rehabilitation research, health services and clinical trials for paralysis. The bill will also establish Quality Enhancement Research Initiatives (QERIs) to identify best practices and define outcome measurements associated with paralysis and improve health-related quality of life.

"Due to the efforts led by the National Institutes of Health and the Christopher Reeve Paralysis Foundation, our nation stands on the brink of amazing breakthroughs in science for those living with paralysis," said U.S. Rep. Michael Bilirakis. "There is an urgent need for the federal government to further step up its commitment to this area. The Christopher Reeve Paralysis Act would do just that."

"Recent scientific evidence shows that there is hope for those living with paralysis. Christopher Reeve's recovery is just one example," said U.S. Rep. Sherrod Brown. "At research centers around the globe, new techniques of rigorous exercise have helped many people living with paraplegia walk for short distances, unassisted or using walkers. We need research to see if these new interventions can assist the entire population of individuals living with paralysis and make them available in communities through CDC."

"Today, through the Christopher Reeve Paralysis Act of 2003, we seek to further advance the science needed to help people living with paralysis take their next step and to further advance full participation, independent living, self-sufficiency and equality of opportunity," said U.S. Sen. Tom Harkin. "This bill will, for the first time, ensure that individuals living with paralysis get the information they need; have access to public health programs; and support in their communities to navigate services."

"We are on the brink of major scientific breakthroughs for individuals impacted by neurological disorders and stroke that result in paralysis," said U.S. Sen. Arlen Specter. "This bill will ensure that the federal government step up its commitment to help more than two million Americans."

"The CRPF has had great success largely by funding scientists committed to sharing their research results with other scientists working in similar areas. That model of cooperation has expedited major advances and avoided the duplication of failures," said Reeve. "This legislation will help the federal government create a similar research model. This could be the fastest, most efficient route to finding real cures and treatments for a variety of diseases and disabilities."

The Christopher Reeve Paralysis Foundation (CRPF) is committed to funding research that develops treatments and cures for paralysis caused by spinal cord injury and other central nervous system disorders. The Foundation also vigorously works to improve the quality of life for people living with disabilities through its grants program, paralysis resource center, and advocacy efforts. For more information about CRPF, please call 800-225-0292 or visit our website at http://www.christopherreeve.org.