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Thread: Christopher and Dana Reeve Paralysis Act

  1. #71
    Quote Originally Posted by karmitage37
    Hi!
    I stumbled upon this site and decided to join. Please excuse my ignorance, but I saw Tammy Baldwins name on this list, and I am wondering what exactly it is for. My son is a 12 year old T12 SCI patient due to a MVA last year. It is a whole new world, and very lonely for both of us at times, so I am searching for help, fellowship, and support. Would soemone call or email me? karmitage37@yahoo.com
    Tammy Baldwin is the sponsor of the Christopher and Dana Reeve Paralysis Act, legislation that would expand paralysis research and establish programs for improving rehabilitation, care and quality of life for people wiht SCI. If she's your representative you are fortunate to be represented by someone who has been a leader in efforts to help your son.

    I know the feelings of loneliness and despair you feel at times. I had many days like that in the weeks and months after my mothers accident. I would venture to say everyone on this board has. I can tell you that it gets easier and it won't always be this way. This board is a good place for advice, support and fellowship.

  2. #72
    Here is a short video with images and voiceovers about last spring's Rally and the status of the CDRPA. My thanks to Rusty for the title. Individuals who wish to contact their Senators or legislative Health aides may find this a useful link to include in an email.

    Broken Bodies, Soaring Spirits

    John
    "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

  3. #73

    Pass this video along to the Senate!

    Great video John! You clearly expressed the hope of this community and the need for the passage of the CDRPA.

    Anyone interested in recovery and residing in states that have either one Senator or none, cosponsoring this bill, you need to take the time and share this with them. This bill will come up for a vote after Thanksgiving. If it doesn’t pass, it’s not only due to the lack of support by legislators, it’s also due to the lack of support by the community it hoped to help.

    Many have worked for five years to see this passed. I’ve 'only' been at it for two and starting all over again to rally support for this bill isn’t an option. We are closer than we have ever been and with your help, we can get this passed.

    There are a handful of people that work extremely hard to advance research and it clearly isn’t enough. With more support this bill would have already passed. With more support, the research bill in NJ would have passed. Research has never been more promising and in order for it to go forward, everyone needs to support it. The key word here is EVERYONE!

    If you don’t want to write your own letter, you can send the attached letter which is appropriate for Thanksgiving and attach John’s video. All the tools are here for you to use. Please take the time to support this bill. Research lags because of the lack of support.

    Are you part of the solution, or part of the problem?

    Here is the current list of cosponsors on the Senate side -

    10 states have both Senators cosponsoring the bill.
    They are CA, IL, MA, MD, NJ, NY, OH, PA, RI and VT
    Clearly the East Coast Rocks!

    As of Nov. 13, MD has support from both Senators!

    11 states have a single cosponsor

    • CA – Barbara Boxer - Dianne Feinstein
    • CT – Chris Dodd
    • HI – Daniel Inouye
    • IL – Dick Durbin - Barack Obama
    • IA – Tom Harkin
    • MI – Carl Levin
    • MN – Norm Coleman
    • MD – Barbara Mikulski – Benjamin Cardin
    • MA – John Kerry - Edward Kennedy
    • NJ – Frank Lautenberg - Robert Menendez
    • NM – Jeff Bingaman
    • NY – Hillary Clinton - Charles Shumer
    • NC – Richard Burr
    • OH – Sherrod Brown - George Voinovich
    • OR – Gordon Smith
    • PA – Robert Casey - Arlen Specter
    • RI – Jack Reed - Sheldon Whitehouse
    • SC – Lindsey Graham
    • SD – Tim Johnson
    • VT – Bernard Sanders - Patrick Leahy
    • WA – Patty Murray

    29 states have no cosponsors at all!
    "Our lives begin to end the day
    we become silent about things that matter."
    - Martin Luther King Jr

  4. #74

    Thanks for the update

    I am pleased to see that Ben Cardin finally signed on but disappointed it took so much work and effort. He has always been a supporter of the SCI/paralysis community. Anyone know why it took so long? Was it oversite or did he need reassurance in a particular area? Sue, Josh, any insight would be helpful. This has colored how I intend to vote next time around.
    Every day I wake up is a good one

  5. #75
    Wrong Sue, Cheesecake, I know, but, I'll add my $.02, anyway. I think it really is mostly about getting the needed attention. Here in Minnesota, I have been pestering Sen. Amy Klobuchar to sign on for months. Her aid keeps telling me he will discuss it with her, but, it keeps getting prioritized to the bottom of the list. He is certain she will support it. It would be a great thing to get her on board to demonstrate the true bipartisan nature of this bill. She is a Democrat and her counterpart from the state of MN, Sen. Norm Coleman, is a Republican and lead co-sponsor of the CDRPA.

  6. #76
    Senior Member WheelieMike's Avatar
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    Stupid Question...

    Ok, I've read a little on this Paralysis Act. It intends to provide more funding for research and to improve the quality of life of SCI'ers.

    How do they intend to improve the quality of life?
    Stupidity ain't illegal, but it sure is inconvenient.


    Help me support the 2010 Bike MS.

  7. #77
    Senior Member Leo's Avatar
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    hi mike,

    it's kinda one in the same,

    http://sci.rutgers.edu/forum/showthr...hlight=medical
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  8. #78

    Sen. Tom Coburn holds CDRPA in Senate

    and here, at last, is our problem in the US Senate...

    “I’ve held up tons of bills that I’ve gotten bad press on,” Coburn said.

    One of those is the Christopher and Dana Reeve Paralysis Act, sponsored by Sen. Tom Harkin (D-Iowa), which would direct funding toward paralysis research. Coburn is holding it, arguing that such research is already being federally funded and decisions should be made by peer-reviewed medical authorities, not Congress."

    Full story here:

    http://coburn.senate.gov/public/inde...a-7c724b2adace

    It seems he is proud of it--perhaps he needs to spend some time in a chair?

  9. #79
    Thanks Sue. I called his press office to ask about this.

    Coburn was the primary sponsor of S.1557 last session, which directed the NIH to fund research that was already being federally funded and appropriated $15 million to do it.

    My question: Why the contradiction?
    ...it's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.

  10. #80
    Quote Originally Posted by Steven Edwards
    Thanks Sue. I called his press office to ask about this.

    Coburn was the primary sponsor of S.1557 last session, which directed the NIH to fund research that was already being federally funded and appropriated $15 million to do it.

    My question: Why the contradiction?
    Thx, Steven--I'm beyond pissed off at the moment. I need to calm down to think rationally.

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