Page 1 of 3 123 LastLast
Results 1 to 10 of 21

Thread: Support the Christopher Reeve Paralysis Act

  1. #1

    Support the Christopher Reeve Paralysis Act

    Support the Christopher Reeve Paralysis Act
    Hope Network Action Alert

    We need you! Advocates, make your voices heard!

    Send a Message to your Senators and Representatives. Simply type in your zip code to the right to send a message.

    http://www.congress.org/congressorg/...alertid=600011

    Let them know you are standing up for those who can't.

    The Christopher Reeve Paralysis Act enhances and furthers research into paralysis, and improves rehabilitation and the quality of life for people living with paralysis.

    For a summary of the Act, click here. (See below)

    WHAT YOU CAN DO RIGHT NOW:

    Send a Message to Your Members of Congress. What do you say? The message is ready to go, we just need you to send it to your Representatives. Simply type in your zip code to begin. For Talking Points, click here. (See below)

    Time is of the essence! Supporters of the bill have called upon Congress to pass this legislation this year.

    SEND A MESSAGE NOW! This is your chance to be heard in Washington!

    For further information regarding the Hope Network, click here.
    http://www.congress.org/congressorg/...alertid=600011

    We Must. We Can. We Will.


    Summary of the Act:

    Christopher Reeve Paralysis Act of 2002


    October 1, 2002

    On September 25th, as a birthday gift to Christopher Reeve, the House and Senate introduced The Christopher Reeve Paralysis Act of 2002.

    The bill (S. 3000, H.R. 5458) is designed to enhance and further research into paralysis and to improve rehabilitation and the quality of life for persons living with paralysis and other physical disabilities.Sponsors of the legislation have called on Congress to pass the bill this year.

    Through the work funded by the CRPF, and the lack of substantial private investment, a vacuum of research in paralysis was identified.We recognize that research needs to be advanced and supported by the Federal Government.The bill authorizes funding to expand and coordinate research on paralysis at the National Institutes of Health, acting through the Director of National Institutes of Neurological Disorders and Stroke (NINDS) including:

    * Establishing Christopher Reeve Paralysis Research Consortia to advance the science on paralysis from central nervous system trauma and stroke; and* Enhancing efforts to translate and disseminate clinical and scientific findings on paralysis.


    The CRPF also recognizes the need to invest in rehabilitation research.The bill authorizes the expansion and coordination of activities of the National Institutes of Health, acting through the National Center for Medical Rehabilitation Research (NCMRR), with respect to research with implications for enhancing daily function for people with paralysis, including:

    * Establishing a Paralysis Clinical Trials Network to design clinical rehabilitation intervention protocols and measures of outcomes on one or more forms of paralysis that result form central nervous system trauma, disorder and stroke with the goal of improving functional mobility, preventing secondary complications and developing improved assistive technology amongst other things; and* Enhancing efforts to translate and disseminate clinical and scientific findings on rehabilitation research and paralysis.

    Through the Christopher and Dana Reeve Paralysis Resource Center, the CRPF has identified a number of quality of life programs that could act as national models for state programs. The bill authorizes the Secretary of Health and Human Services acting through the Centers for Disease Control and Prevention 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, including

    * Developing a National Paralysis and Physical Disability Action Plan in partnership with voluntary health and disability organizations;* Establishing 50 State-based Paralysis and other Physical Disability Quality of Life Programs focused on caregiver education, physical activity, prevention of secondary complications, home and community-based interventions, education and awareness programs for health care providers; coordination of services and removing environmental barriers that prevent full participation and integration into the community;* Supporting the Christopher and Dana Reeve Paralysis Resource Center;* Establishing a paralysis-registry to support surveillance for research, education and quality of life purposes; and* Providing grants to non-profit private health and disability organizations to coordinate existing state services with State-based paralysis and physical disability programs; disseminate information to the public; improve access to services and test model intervention program to improve quality of life.

    http://www.congress.org/congressorg/...alertid=600011

    [This message was edited by seneca on 03-05-03 at 17:31.]

  2. #2

    Talking points for you when contacting your Senators and Representatives

    Tell your Senators and Representative that:

    (1)テつ*Two million Americans are living with paralysis, and there is a needテつ* for increased Federal support for the clinical and rehabilitation research on paralysis.

    (2)テつ*Overall days hospitalized in the acute care for those with spinal cord injury has declined from 25 days in 1974 to 15 days in 1996. Similar down trends have been noted for days in rehab: 115 days to 44 days. Services for people with paralysis do not provide ample rehabilitation and after care.

    (3)テつ*People suffering from physical disabilities want to be active in their community however, more community services must be made available:

    * Only 32% of people with disability are employed full-time vs. 80% of population without disabilities

    * One third of people living with disabilities are likely to postpone or put off needed health careテつ*

    * One third of people living with disabilities live with very low incomes of $15,000

    * One third of people living with disability consider inadequate transportation to be a problem

    * Over $300 billion is the annual cost associated with disability. This cost includes $160 billion in medical care expenses (1994 dollars); and lost productivity costs which approach $155 billion (IOM 1997).

    (4)テつ*The Christopher Reeve Paralysis Act of 2002, will enhance and further research into paralysis and improve rehabilitation and the quality of life for persons living with paralysis and other physical disabilities.

  3. #3
    Seneca,

    This bill was introduced in the last congressional session (107th), which is why we couldn't find its status. The bill seems to have stalled in committees in both the House and Senate last year. I think the bill would have to be reintroduced this session before we can call and support it.

    -Steven

  4. #4
    The bill will be re-submitted in April or May of this year after it's revised. Cheesecake will post the revised bill as soon as it's completed. Please continue to urge your representatives to support it.

    [This message was edited by seneca on 03-07-03 at 22:05.]

  5. #5
    I think that it is good to know why people do or do not support the Christopher Reeve Paralysis Bill. I will put up a poll because I some people may have indicated their lack of interest or favor for the topic. This is a good topic to get opinions in so that the bill can reflect what people in the community would like to see happen.

    By the way, if you click the link above, it will take you to a web site that allows you to send a letter to your representatives by entering your zip code, your name, your address, and your email address. It cannot be easier.

    My only misgiving is that Senators Clinton and Schuman had topics that they force you to choose and they have none for spinal cord injury research, only stem cells and general health care.

    Wise.

    Wise.

  6. #6
    C'mon, everybody do it!

  7. #7
    seneca,

    Do you or cheesecake know who will be sponsoring the bill this time around?

    [oh yeah, join idio... Scrabble? ]

    -Steven

  8. #8
    I will see if I can locate who the sponsors were last time...that will give a sense of this time around.

    "Don't worry about the world coming to an end today.
    It's already tomorrow in Australia!"----- Charles Schultz


  9. #9
    Last Senate session, Harkin introduced the bill (S3000) for himself, Brownack, Kennedy, and Specter.

    Last House session, Bilirakis introduced the bill (HR 5458)for himself, Brown [OH], Young [FL], Langevin, Houghton, and Hoyer.

    -Steven

  10. #10
    looking good so far in Virginia. I received a letter from my representative today after emailing a week ago:

    Dear Mr. {my last name},

    Thank you for your email of March 5th concerning the Christopher Reeve Paralysis Act. I have not had the opportunity yet to review that legislation. However, based on your email and on my general knowledge of the topic, I am favorably inclined towards this legislation.

    ...with kind regards,
    Sincerely,
    Virgil Goode, Jr.
    It only takes a few minutes people. Just get in touch w/ those who can make this stuff happen

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •