Last year's, many people from the CareCure site went to an April Rally in Washington to honor Christopher Reeve and to encourage Congressional legislators to re-introduce the Christopher Reeve Paralysis Act (S.828.IS and H.R.1554.IH) It was a wonderful meeting for many people and succeeded in the re-introduction of the Christopher Reeve Paralysis Act. The following is an updated summary of the bill and the bill itself.

This year, Working 2 Walk (W2W) is holding a Washington DC Symposium and Rally on April 29- May 2, 2006. All members of carecure are of course very welcome to go. Details can be seen at http://www.working2walk.org/ If you cannot come, you can be a sponsor for somebody else to go or contribute to the symposium and rally. The deadline for sponsor commitmnt & payment must be completed by March 24, 2006. Please go to http://www.unite2fightparalysis.org/...k/sponsors.htm to sign up.

In my opinion, this is one of the most worthwhile things that you can do to accelerate spinal cord injury and cure research in the United States. This bill will not only provide funds but will coordinate research activities and establish a clinical trial network to assess therapies. It is an opportunity to make things happen in the United States. Thank you.

Here is a shorter summary of the CRPA by me, including appropriations:

• Title I. The Director of NIH will be required to expand and coordinate the research activities of each of the Institutes doing research relevant to spinal cord injury and paralysis. The National Institute of Neurological Disorders and Stroke (NINDS) will be the lead agency and the Director of NINDS will carry out Title 1 including the awarding of grants to establish, improve, and support consortia in paralysis research. Appropriations of $25 million will be provided for this purpose.
• Title II. The Director of NIH will establish multicenter clinical trial network(s) that address aras of key scientific concern, including improving functional mobility, promoting behavioral adaptations to functional losses, especially to prevent secondary complications; assess the efficacy and outcomes of medical rehabilitation therapies and practices, and assistive technologies; and understanding the whole body response to physical impairments, disabilities, and societal and functional limitations. Appropriations of $25 million will be provided for this purpose.
• Title III. The Secretary of Health and Human Serices will develop a national paralysis and physical disability quality of life action plan, to promote health and wellness in order to enhance full participation. The Secretary may award grants to state and local health and disability agencies for the purposes to establishing paralysis registries for population based research, promote and coordinate activities with existing state-based disability and health programs, and other public halth agencies. Appropriations of $25 million will be provided for this purpose.
• Title IV. The Secretary will expand and coordinate activities of the Veterans Health and the Department of Veterans Affairs with respect to research on paralysis. This includs basic biomedical research, clinical science research, rehabilitation research, and health services research. The VA centers may be linked with the clinical trial consortia to be established in Title II. Appropriations of $25 million will be provided for this purpose.

The funding period is 2006-2009.

Here is a summary from NIH:
Christopher Reeve Paralysis Act

S.828.IS and H.R.1554.IH

http://olpa.od.nih.gov/legislation/1.../paralysis.asp

Background

In 1995, actor Christopher Reeve damaged his spinal cord in an equestrian competition. The spinal cord is about the same diameter as the thumb and is filled with gel like material much like that of the brain. Because the gel like filler makes the spinal cord very elastic, it would take a projectile, such as a bullet or knife, to separate or sever the cord. More often, the cord is traumatically damaged. Most spinal cord injuries result from a pinched, dented, or bruised cord, not an actual break. When a spinal cord is injured, the cells in the center of the cord die, and the cord becomes hollow, leaving a donut rim of tissue on the outside. Without enough cells, the spinal cord cannot function properly.

S.828.IS and H.R.1554.IH are identical bills. The legislation focuses attention on research related to paralysis resulting from a variety of neurological events and encourages cross-disciplinary and cross-institutional collaborations.
Provisions of the Legislation/Impact on NIH

* Title I of the legislation addresses research activities. Specifically, the legislation states that the Director of the National Institutes of Health (NIH), acting through the Director of the National Institute of Neurological Disorders and Stroke (NINDS), may expand and coordinate the paralysis research activities of the Institutes. The legislation encourages this coordination to avoid duplication of effort. A report to Congress describing the paralysis activities and strategies for future research would be required. The bills would also allow the Director of NIH to make awards to public or nonprofit private entities to pay all or part of the costs of planning, establishing, improving, and providing basic operating support for consortia in paralysis research. NIH would designate each consortium funded by these awards as a Christopher Reeve Paralysis Research Consortium. The legislation prescribes how the consortia would be organized, outlines the type of research focus, and urges that the research be coordinated. The legislation encourages the Director of NIH to provide for a mechanism to educate and disseminate information to the public on existing and planned NIH paralysis research and program activities.

* Title II of the legislation addresses rehabilitation research care activities. The Director of NIH, acting through the Directors of the National Institute of Child Health and Human Development and of the National Center for Medical Rehabilitation Research and in collaboration with acronym title="National Institute of Neurological Disorders and Stroke">NINDS, the Centers for Disease Control and Prevention CDC), and any other appropriate agencies, is encouraged to expand and coordinate research with implications for enhancing daily function for people with paralysis. Both bills would allow the Director to make awards to public or nonprofit private entities to pay all or part of the costs of planning, establishing, improving, and providing basic operating support for multicenter networks of clinical sites. These sites would collaborate to design clinical rehabilitation intervention protocols and measures of outcomes of one or more forms of paralysis that result from central nervous system trauma, disorders, or stroke, or any combination of such conditions. The legislation prescribes how the multicenter clinical trial network would be organized, outlines the type of research focus, and urges that the research be coordinated. The legislation would require NIH to submit a report to Congress that provides a description of research activities with implications for enhancing daily function for persons with paralysis.

* Title III of the legislation provides for activities through the U.S. Department of Health and Human Services to improve the quality of life for persons with paralysis and other physical disabilities. The legislation encourages the Secretary of Health and Human Services (HHS), acting through the Director of CDC, to study the unique health challenges associated with paralysis and other physical disabilities and carry out projects and interventions to improve the quality of life and long-term health status of persons with paralysis and other physical disabilities. The Secretary of HHS would be able to carry out such projects directly and through awards of grants or contracts.

* Through Title IV of the legislation, the Secretary of Veterans Affairs (VA), acting through the Director of the Office of Research and Development of the Veterans Health Administration and in collaboration with NIH and other agencies the Secretary deems appropriate, would be able to expand and coordinate activities with respect to research on paralysis. The Secretary of VA would be able to establish within the U.S. Department of Veterans Affairs centers for paralysis research, education, and clinical activities. The centers would be established at VA medical centers through the award of grants to VA medical centers that are affiliated with medical schools or other organizations that the Secretary deems appropriate. These grants could be used to pay all or part of the costs of planning, establishing, improving, and providing basic operating support for such centers. The research could focus on basic biomedical research on paralysis, rehabilitation research on paralysis, and health services and clinical trials for paralysis that results from central nervous system trauma or stroke; facilitate and enhance the dissemination of clinical and scientific findings; and replicate the findings of centers for scientific and translational purposes. The Secretary of VA could provide for the linkage and coordination of information among centers in order to create national consortia of centers and ensure regular communications between the centers. Each consortium would be able to conduct large-scale clinical trials for greater statistical significance; operate as part of an interdisciplinary rehabilitation team; focus on determining current standards of care and best practices; identify research gaps for specific populations; and identify future research needs.

The following is the text of the bill
S.828
Christopher Reeve Paralysis Act (Introduced in Senate)

SECTION 1. SHORT TITLE.

This Act may be cited as the `Christopher Reeve Paralysis Act'.

SEC. 2. TABLE OF CONTENTS.

The table of contents of this Act is as follows:

Sec. 1. Short title.

Sec. 2. Table of contents.

TITLE I--PARALYSIS RESEARCH

Sec. 101. Expansion and coordination of activities of the National Institutes of Health with respect to research on paralysis.

TITLE II--PARALYSIS REHABILITATION RESEARCH AND CARE

Sec. 201. Expansion and coordination of activities of the National Institutes of Health with respect to research with implications for enhancing daily function for persons with paralysis.

TITLE III--IMPROVING QUALITY OF LIFE FOR PERSONS WITH PARALYSIS AND OTHER PHYSICAL DISABILITIES

Sec. 301. Programs to improve quality of life for persons with paralysis and other physical disabilities.

TITLE IV--ACTIVITIES OF THE DEPARTMENT OF VETERANS AFFAIRS

Sec. 401. Expansion and coordination of activities of the Veterans Health Administration.

Sec. 402. Definitions.

TITLE I--PARALYSIS RESEARCH

SEC. 101. EXPANSION AND COORDINATION OF ACTIVITIES OF THE NATIONAL INSTITUTES OF HEALTH WITH RESPECT TO RESEARCH ON PARALYSIS.

(a) In General-

(1) ENHANCED COORDINATION OF ACTIVITIES- The Director of the National Institutes of Health (in this section referred to as the `Director') may expand and coordinate the activities of such Institutes with respect to research on paralysis. In order to further expand upon the activities of this section, the Director may consider the methods outlined in the report under section 2(b) of Public Law 108-427 with respect to spinal cord injury and paralysis research (relating to the Roadmap for Medical Research of the National Institutes of Health).

(2) ADMINISTRATION OF PROGRAM; COLLABORATION AMONG AGENCIES- The Director shall carry out this section acting through the Director of the National Institute of Neurological Disorders and Stroke (in this section referred to as the `Institute') and in collaboration with any other agencies that the Director determines appropriate.

(b) Coordination-

(1) IN GENERAL- The Director may develop mechanisms to coordinate the paralysis research and rehabilitation activities of the agencies of the National Institutes of Health in order to further advance such activities and avoid duplication of activities.

(2) REPORT- Not later than December 1, 2005, the Director shall prepare and submit a report to Congress that provides a description of the paralysis activities of the Institute and strategies for future activities.

(c) Christopher Reeve Paralysis Research Consortia-

(1) IN GENERAL- The Director may under subsection (a)(1) make awards of grants to public or nonprofit private entities to pay all or part of the cost of planning, establishing, improving, and providing basic operating support for consortia in paralysis research. The Director shall designate each consortium funded under grants as a Christopher Reeve Paralysis Research Consortium.

(2) RESEARCH- Each consortium under paragraph (1)--

(A) may conduct basic and clinical paralysis research;

(B) may focus on advancing treatments and developing therapies in paralysis research;

(C) may focus on one or more forms of paralysis that result from central nervous system trauma or stroke;

(D) may facilitate and enhance the dissemination of clinical and scientific findings; and

(E) may replicate the findings of consortia members for scientific and translational purposes.

(3) COORDINATION OF CONSORTIA; REPORTS- The Director may, as appropriate, provide for the coordination of information among consortia under paragraph (1) and ensure regular communication between members of the consortia, and may require the periodic preparation of reports on the activities of the consortia and the submission of the reports to the Director.

(4) ORGANIZATION OF CONSORTIA- Each consortium under paragraph (1) may use the facilities of a single lead institution, or be formed from several cooperating institutions, meeting such requirements as may be prescribed by the Director.

(d) Public Input- The Director may under subsection (a)(1) provide for a mechanism to educate and disseminate information on the existing and planned programs and research activities of the National Institutes of Health with respect to paralysis and through which the Director can receive comments from the public regarding such programs and activities.

(e) Authorization of Appropriations- For the purpose of carrying out this section, there are authorized to be appropriated in the aggregate $25,000,000 for the fiscal years 2006 through 2009. Amounts appropriated under this subsection are in addition to any other amounts appropriated for such purpose.

TITLE II--PARALYSIS REHABILITATION RESEARCH AND CARE

SEC. 201. EXPANSION AND COORDINATION OF ACTIVITIES OF THE NATIONAL INSTITUTES OF HEALTH WITH RESPECT TO RESEARCH WITH IMPLICATIONS FOR ENHANCING DAILY FUNCTION FOR PERSONS WITH PARALYSIS.

(a) In General-

(1) EXPANSION OF ACTIVITIES- The Director of the National Institutes of Health (in this section referred to as the `Director') may expand and coordinate the activities of such Institutes with respect to research with implications for enhancing daily function for people with paralysis.

(2) ADMINISTRATION OF PROGRAM; COLLABORATION AMONG AGENCIES- The Director shall carry out this section acting through the Director of the National Institute on Child Health and Human Development and the National Center for Medical Rehabilitation Research and in collaboration with the National Institute on Neurological Disorders and Stroke, the Centers for Disease Control and Prevention, and any other agencies that the Director determines appropriate.

(b) Paralysis Clinical Trials Networks-

(1) IN GENERAL- The Director may make awards of grants to public or nonprofit private entities to pay all or part of the costs of planning, establishing, improving, and providing basic operating support to multicenter networks of clinical sites that will collaborate to design clinical rehabilitation intervention protocols and measures of outcomes on one or more forms of paralysis that result from central nervous system trauma, disorders, or stroke, or any combination of such conditions.

(2) RESEARCH- Each multicenter clinical trial network may--

(A) focus on areas of key scientific concern, including--

(i) improving functional mobility;

(ii) promoting behavioral adaptation to functional losses, especially to prevent secondary complications;

(iii) assessing the efficacy and outcomes of medical rehabilitation therapies and practices and assisting technologies;

(iv) developing improved assistive technology to improve function and independence; and

(v) understanding whole body system responses to physical impairments, disabilities, and societal and functional limitations; and

(B) replicate the findings of network members for scientific and translation purposes.

(3) COORDINATION OF CLINICAL TRIALS NETWORKS; REPORTS- The Director may, as appropriate, provide for the coordination of information among networks and ensure regular communication between members of the networks, and may require the periodic preparation of reports on the activities of the networks and submission of reports to the Director.

(c) Report- Not later than December 1, 2005, the Director shall submit to the Congress a report that provides a description of research activities with implications for enhancing daily function for persons with paralysis.

(d) Authorization of Appropriations- For the purpose of carrying out this section, there are authorized to be appropriated in the aggregate $25,000,000 for the fiscal years 2006 through 2009. Amounts appropriated under this subsection are in addition to any other amounts appropriated for such purpose.

TITLE III--IMPROVING QUALITY OF LIFE FOR PERSONS WITH PARALYSIS AND OTHER PHYSICAL DISABILITIES

SEC. 301. PROGRAMS TO IMPROVE QUALITY OF LIFE FOR PERSONS WITH PARALYSIS AND OTHER PHYSICAL DISABILITIES.

(a) In General- The Secretary of Health and Human Services (in this title referred to as the `Secretary'), acting through the Director of the Centers for Disease Control and Prevention, may study the unique health challenges associated with paralysis and other physical disabilities and carry out projects and interventions to improve the quality of life and long-term health status of persons with paralysis and other physical disabilities. The Secretary may carry out such projects directly and through awards of grants or contracts.

(b) Certain Activities- Activities under subsection (a) include--

(1) the development of a national paralysis and physical disability quality of life action plan, to promote health and wellness in order to enhance full participation, independent living, self-sufficiency and equality of opportunity in partnership with voluntary health agencies focused on paralysis and other physical disabilities, to be carried out in coordination with the State-based Comprehensive Paralysis and Other Physical Disability Quality of Life Program of the Centers for Disease Control and Prevention;

(2) support for programs to disseminate information involving care and rehabilitation options and quality of life grant programs supportive of community based programs and support systems for persons with paralysis and other physical disabilities;

(3) in collaboration with other centers and national voluntary health agencies, establish a hospital-based paralysis registry and conduct relevant population-based research; and

(4) the development of comprehensive, unique and innovative programs, services, and demonstrations within existing State-based disability and health programs of the Centers for Disease Control and Prevention which are designed to support and advance quality of life programs for persons living with paralysis and other physical disabilities focusing on--

(A) caregiver education;

(B) physical activity;

(C) education and awareness programs for health care providers;

(D) prevention of secondary complications;

(E) home and community-based interventions;

(F) coordinating services and removing barriers that prevent full participation and integration into the community; and

(G) recognizing the unique needs of underserved populations.

(c) Grants- The Secretary may award grants in accordance with the following:

(1) To State and local health and disability agencies for the purpose of--

(A) establishing paralysis registries for the support of relevant population-based research;

(B) developing comprehensive paralysis and other physical disability action plans and activities focused on the items listed in subsection (b)(4);

(C) assisting State-based programs in establishing and implementing partnerships and collaborations that maximize the input and support of people with paralysis and other physical disabilities and their constituent organizations;

(D) coordinating paralysis and physical disability activities with existing State-based disability and health programs;

(E) providing education and training opportunities and programs for health professionals and allied caregivers; and

(F) developing, testing, evaluating, and replicating effective intervention programs to maintain or improve health and quality of life.

(2) To nonprofit private health and disability organizations for the purpose of--

(A) disseminating information to the public;

(B) improving access to services for persons living with paralysis and other physical disabilities and their caregivers;

(C) testing model intervention programs to improve health and quality of life; and

(D) coordinating existing services with State-based disability and health programs.

(d) Coordination of Activities- The Secretary shall assure that activities under this section are coordinated as appropriate with other agencies of the Public Health Service.

(e) Report to Congress- Not later than December 1, 2005, the Secretary shall submit to Congress a report describing the results of the evaluation under subsection (a), and as applicable, the strategies developed under such subsection.

(f) Authorization of Appropriations- For the purpose of carrying out this section, there are authorized to be appropriated in the aggregate $25,000,000 for the fiscal years 2006 through 2009.

TITLE IV--ACTIVITIES OF THE DEPARTMENT OF VETERANS AFFAIRS

SEC. 401. EXPANSION AND COORDINATION OF ACTIVITIES OF THE VETERANS HEALTH ADMINISTRATION.

(a) In General-

(1) ENHANCED COORDINATION OF ACTIVITIES- The Secretary may expand and coordinate activities of the Veterans Health Administration of the Department of Veterans Affairs with respect to research on paralysis.

(2) ADMINISTRATION OF PROGRAM- The Secretary shall carry out this section through the Chief Research and Development Officer of the Administration in collaboration with the National Institutes of Health and other agencies the Secretary determines appropriate.

(b) Establishment of Paralysis Research, Education, and Clinical Care-

(1) IN GENERAL- The Secretary may establish within the Department of Veterans Affairs centers to be known as Paralysis Research, Education and Clinical Care Centers. Such centers shall be established through the awarding of grants to Administration medical centers that are affiliated with medical schools or other organizations the Secretary considers appropriate. Such grants may be used to pay all or part of the costs of planning, establishing, improving, and providing basic operating support for such centers.

(2) RESEARCH- Each center under paragraph (1)--

(A) may focus on basic biomedical research on the types of paralysis that result from neurologic dysfunction, neurodegeneration, or trauma;

(B) may focus on clinical science research on the types of paralysis that result from neurologic dysfunction, neurodegeneration, or trauma;

(C) may focus on rehabilitation research on the types of paralysis that result from neurologic dysfunction, neurodegeneration, or trauma;

(D) may focus on health services research on the types of paralysis that result from neurologic dysfunction, neurodegeneration, or trauma to improve health outcomes, increase the cost-effectiveness of service, and implement best practices in the treatment of such types of paralysis; and

(E) may facilitate and enhance the dissemination of scientific findings and evidence-based practices.

(3) COORDINATION OF CENTERS INTO CONSORTIA- The Secretary may, as appropriate, provide for the linkage and coordination of information among centers under paragraph (1) in order to create national consortia of centers and to ensure regular communications between members of the centers. Each consortium--

(A) may expand the capacity of its Administration medical centers to conduct basic, clinical, rehabilitation, and health-sciences research with respect to paralysis by increasing the available research resources;

(B) may identify gaps in research, clinical service, or implementation strategies;

(C) may operate as a multidisciplinary research and clinical care team to determine best practices, to develop standards of care, and to establish guidelines for implementation throughout the Administration;

(D) may use the facilities of a single lead institution, or facilities formed from several cooperating institutions, that meet such requirements as prescribed by the Secretary;

(E) may provide core funding that will enhance ongoing research by bringing together paralysis health care and research communities in a manner that will enrich the effectiveness of clinical care, present research and future directions; and

(F) may include administrative, research, clinical, educational and implementation cores, and other cores that may be proposed.

(4) COORDINATION OF INFORMATION; REPORTS- The Secretary may, as appropriate, provide for the coordination of information among centers and consortia under this section and ensure regular communication with respect to the activities of the centers and consortia, and may require the periodic preparation of reports on the activities of the centers and consortia, and require the submission of such reports.

(c) Establishment of Quality Enhancement Research Initiatives for Paralysis-

(1) IN GENERAL- The Secretary may make grants to medical centers of the Administration for the purpose of carrying out projects to translate clinical findings and recommendations with respect to paralysis into evidence-based best practices for use by the Administration. Such projects shall be designated by the Secretary as Quality Enhancement Research Initiative projects (referred to in this subsection as `QUERI projects').

(2) REQUIREMENT- A grant may be made under paragraph (1) to a medical center described in such paragraph only if the center is affiliated with a school of medicine or with another entity determined by the Secretary to be appropriate.

(3) CERTAIN USES OF GRANT- The activities for which a grant under paragraph (1) may be expended by a QUERI project include the following:

(A) To pay all or part of the costs of planning, establishing, improving and providing basic operating support for the project.

(B) To work toward implementing best practices identified under paragraph (1) throughout the Administration through efforts to facilitate comprehensive organizational change, and to evaluate and refine such implementation efforts through the collection, analysis, and reporting of data on critical patient outcomes and system performance.

(C) To identify high-risk or high-volume primary or secondary consequences of paralysis that results from neurologic dysfunction, neurodegeneration, or trauma.

(D) To systematically examine quality of care for persons with paralysis from neurologic dysfunction, neurodegeneration, or trauma.

(E) To define existing practice patterns and outcomes for persons with paralysis throughout the Administration and current variation from best practices both within and outside of the Department of Veterans Affairs.

(F) To enhance ongoing research by bringing together paralysis clinical care and health service research communities to identify the health care needs of the paralysis community, examine standard practices, determine best practices and to implement best practices for persons with paralysis and their families.

(G) To formulate health service research protocols aimed at determining paralysis-care related best practices, closing the gap between current practices in paralysis care in the Department of Veterans Affairs, assessing the best practices within and outside of the Department of Veterans Affairs, and developing strategies for the implementation of best practices.

(H) To implement information, tools, products and other interventions determined to be in the best interest of persons with paralysis (including performance criteria for clinicians and psychosocial interventions for veterans and their families).

(I) To disseminate findings in scientific peer-reviewed journals and other venues deemed appropriate, such as veteran service organization publications.

(4) ORGANIZATION OF PROJECT- Each QUERI project may use the facilities of a single lead medical center, or be formed from cooperating such centers that meet such requirements as may be prescribed by the Secretary.

(5) MAINTENANCE OF EFFORT- A grant may be made under paragraph (1) only if, with respect to activities for which the award is authorized to be expended, the applicant for the award agrees to maintain expenditures of non-Federal amounts for such activities at a level that is not less than the level of such expenditures maintained by the applicant for the fiscal year preceding the first fiscal year for which the applicant receives such an award.

(d) Authorization of Appropriations- For the purpose of carrying out this section, there are authorized to be appropriated in the aggregate $25,000,000 for fiscal years 2006 through 2009.