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Thread: Christopher and Dana Reeve Paralysis Act

  1. #181
    Quote Originally Posted by aton
    Does anyone have a sample letter they could post to send to Sennators asking for co-sponsors or more support? Thanks.
    I've attached my letter I sent to Senator Bill Nelson and Mel Martinez from Florida.

    Bill Nelson responded with a letter that had nothing to do with the topic of my letter he went on and on about the statistics of the funding for NIH. The first sentence of his letter to me was "Thank you for contacting me regarding the funding of National Institutes of Health (NIH) research"

    I thought I put very specifically in my letter, as you can see, that I wanted to know if he would co-sponsor Senate Bill 1183, Christopher and Dana Reeve Paralysis Act (CDRPA). Was I wrong???? Is funding the NIH the same thing?
    ______

    Mel Martinez said the "Bill was referred to the Senate Committee on Health, Education, Labor, and Pensions, where it awaits further consideration. Although I do not serve on this committee, please know that I will keep your support in mind should S.1183 or related legislation be considered by the full Senate."

    Should I be writing someone else on that committe or is he passing the buck at this time.
    Cindy Waters
    mom to Anthony, right c5, left c4 (24yo)
    injury march 2003

  2. #182
    Senior Member Leo's Avatar
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    Hi Cindy,

    Was I wrong???? Is funding the NIH the same thing?

    Some of them seem to think so.

    Have you spoken with the heath aide?

    Persistence

    thanks for doing all you do
    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."

  3. #183
    Quote Originally Posted by waters3
    I've attached my letter I sent to Senator Bill Nelson and Mel Martinez from Florida.

    Bill Nelson responded with a letter that had nothing to do with the topic of my letter he went on and on about the statistics of the funding for NIH. The first sentence of his letter to me was "Thank you for contacting me regarding the funding of National Institutes of Health (NIH) research"

    I thought I put very specifically in my letter, as you can see, that I wanted to know if he would co-sponsor Senate Bill 1183, Christopher and Dana Reeve Paralysis Act (CDRPA). Was I wrong???? Is funding the NIH the same thing?
    ______

    Mel Martinez said the "Bill was referred to the Senate Committee on Health, Education, Labor, and Pensions, where it awaits further consideration. Although I do not serve on this committee, please know that I will keep your support in mind should S.1183 or related legislation be considered by the full Senate."

    Should I be writing someone else on that committe or is he passing the buck at this time.
    First of all Cindy, thanks for helping to add cosponsors to this bill.
    The letter you received from Sen. Nelson is not unlike letters I've received. Often medical research is referred to as a NIH issue and they send you the NIH form letter.

    It would be appropriate for you to follow up with a phone call explaining some of the details of this bill. If you need any help in this regard, please don't hesitate to contact me. It will likely take numerous phone calls before they understand you're serious about your intent to add him as a cosponsor. Be sure to mention that we are working to have this bill brought up for a vote soon and it's important they review it soon.

    This is the first bill supporting paralysis research and it will reduce redundancies in research thereby allowing the precious few dollars allocated to paralysis research, to be used in the most diligent manner. It's an exciting time for paralysis research and it's important he is aware of that. Attaching links to the congressional briefing from W2W would help explain the promise of current research. It is because the research is so promising, we are working so hard to advance it and would appreciate his support.

    Regarding Mel Martinez -
    I would call them and say we are working to add cosponsors in an effort to bring it up for a vote. It is our understanding that it will be voted on soon and we are working to add cosponsors in an effort to gain additional support prior to that vote. Again, it's bipartisan and it has nothing to do with embryonic stem cell research in the event this is one of their concerns. Send him the congressional briefing info as well.

    And yes, ditto about persistence!! I added a couple more Senator's phone numbers in my cell phone this am. A drive to the store is the perfect opportunity to advocate.

    Good luck!
    "Our lives begin to end the day
    we become silent about things that matter."
    - Martin Luther King Jr

  4. #184
    Senior Member Leo's Avatar
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    my 3rd draft

    Compassionate Conservative

    A very good phrase and I don't think I heard it until GWB's run for president. I thought yeah that pretty well descries me and had hoped to see it happen. Man have I been disappointed and no conservative in a national political office should use this term again because they'd be lying.

    Monday July 28th the senate voted to not bring up a vote on a package of 34 of the 90 bills being held up by Sen. Coburn from Oklahoma. Yes a vote to stop a vote. One senator said these bills could wait. He obviously has not spent a day in a wheelchair or has a loved one dieing from ALS or Cancer. To us time is our enemy and has a whole different meaning.

    One was the Christopher Dana Reeve Paralysis Act, hence my interest. Also bills to establish an ALS registry to help researchers, the Conquer Childhood Cancer Act of 2007, the Prenatally and Postnatally Diagnosed Conditions Awareness Act, Runaway and Homeless Youth Protection Act, Comprehensive Tuberculosis Elimination Act, and please look up the rest.

    Yes there were 2 or 3 of these 34 maybe not that important. However again a group of conservative republicans threw the baby out with the bath water. They are giving conservatism a very bad name and reputation. The total package if funded would have cost approximately. 10 billion dollars for American concerns yet within 2 weeks we will have spent more than that to rebuild Iraq.

    A compassionate conservative came down and shut my sprinkler off because I couldn't, another checked my van over because I couldn't, and I could go on and on.

    Our Sen. Thune voted along with Sen. Coburn and my health can't take much more of their kind of compassion.

    Leo Hallan
    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."

  5. #185
    This bill is never going to pass...and never is a long time. In the 1% miracle that is does; by that time, it will be so watered-down, it won't be worth a shit.

    Face it, they have given this bill the ol' (washington) kiss off.

  6. #186
    Quote Originally Posted by Leo
    Compassionate Conservative

    A very good phrase and I don't think I heard it until GWB's run for president. I thought yeah that pretty well descries me and had hoped to see it happen. Man have I been disappointed and no conservative in a national political office should use this term again because they'd be lying.

    Monday July 28th the senate voted to not bring up a vote on a package of 34 of the 90 bills being held up by Sen. Coburn from Oklahoma. Yes a vote to stop a vote. One senator said these bills could wait. He obviously has not spent a day in a wheelchair or has a loved one dieing from ALS or Cancer. To us time is our enemy and has a whole different meaning.

    One was the Christopher Dana Reeve Paralysis Act, hence my interest. Also bills to establish an ALS registry to help researchers, the Conquer Childhood Cancer Act of 2007, the Prenatally and Postnatally Diagnosed Conditions Awareness Act, Runaway and Homeless Youth Protection Act, Comprehensive Tuberculosis Elimination Act, and please look up the rest.

    Yes there were 2 or 3 of these 34 maybe not that important. However again a group of conservative republicans threw the baby out with the bath water. They are giving conservatism a very bad name and reputation. The total package if funded would have cost approximately. 10 billion dollars for American concerns yet within 2 weeks we will have spent more than that to rebuild Iraq.

    A compassionate conservative came down and shut my sprinkler off because I couldn't, another checked my van over because I couldn't, and I could go on and on.

    Our Sen. Thune voted along with Sen. Coburn and my health can't take much more of their kind of compassion.

    Leo Hallan
    One very important component missing in the debate on the floor, was the cost of paralysis in this country. It has been estimated that the per patient lifetime cost for medical treatment, rehabilitation and other support, ranges from $0.39M for incomplete motor injury at age 50 to $2.4M for a complete high cervical injury at age 25. Putting these figures into perspective, spinal cord injuries cost the U.S. over $14.5 billion per year in direct medical costs and disability support (Berkowitz, et al., Spinal Cord Injury - An Analysis of Medical and Social Costs. New York: Demos Medical Publishing. 1998, page 107). This figure does not include lost productivity, which accounts for an additional $5.5 billion.

    Where is the fiscal responsiblity? The financial burden is being ignored. If this were truly about dollars, this bill should have been passed in a heartbeat. Treating paralysis goes hand in hand with fiscal responsibility. If the Republicans want to be fiscally responsible, they need to support this bill.

    We're not giving up. The return on this bill is worth the struggle. It's not over. I admire your determination and if individuals in this communty don't advocate for themselves, perhaps they should think about doing it for you.
    "Our lives begin to end the day
    we become silent about things that matter."
    - Martin Luther King Jr

  7. #187
    Senior Member kate's Avatar
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    Use this little factoid in your letters:

    That's from a letter dated July 25th from our Congressional Budget Office to the majority leader of our Senate. It says that passing the omnibus bill would have had no effect whatsoever on the federal budget . . . which means that the quacking about spending is absurd on its face.

    The Congressional Budget Office has reviewed S. 3297, a bill to advance
    America’s priorities, as introduced on July 22, 2008. The bill includes
    numerous provisions that would affect health care, criminal statutes, laws to
    protect wildlife and the environment, international aid programs, efforts to
    promote commerce, ocean research, and other government programs.
    Most of the bill’s provisions would specifically or implicitly authorize
    increased appropriations for purposes specified in the bill. By themselves—
    that is, in the absence of subsequent legislation—those authorizations do not
    cause changes in federal spending or revenues.

  8. #188
    why was the CDRPA lumped in with a bunch of other bills? Will it ever be considered by itself again? I hear it had a better chance if it was by itself. I managed to get out letters to my senators before I left town, asking them to clarify their stance on this bill. I see Martinez said no and Nelson said yes. I will send new letters when I get back. I'm kinda confused on what stage the bill(s) are at this point. Are they just sitting there waiting for what now?
    Cindy Waters
    mom to Anthony, right c5, left c4 (24yo)
    injury march 2003

  9. #189
    Sen. Reid lumped the CDRPA w/ the others in hopes of overriding Coburn's hold.

    The bill is on its own again now, but Coburn is still holding it. The only way around the hold is for Reid (Senate Majority Leader) to offer it for another cloture, for that to pass w/ a 60% majority, and then the Senate to vote on the bill.

    Coburn is the Senator from Oklahoma. CLC (fellow Oklahoman, quad) and I have been interviewed this week by a DC-based reporter for the Tulsa World on our unhappiness w/ Coburn. This will be my 2nd article on the subject, the last was front page. This one will be more scathing. I was still trying not to alienate the Senator last time. CLC and I have been to DC to see Coburn, he twice, me 3 times.

    We've gotta turn Coburn, or one of you has to make your Republican Senator believe in the need to. Pressure from Repub Senators is the only thing that can do it. For the love of God, everybody in this country should be flooding his office w/ calls and letters demanding he let democracy operate.

    Last session, we pushed this bill all the way. Coburn held it the last half hour of the last night of the session. Consensus is, that if it could come to a vote, it would pass.

    So no, it's not just sitting there. It's sitting there, blocked by a sphincter.

    ETA: I thought of 1 more suggestion. Any press you can get, anywhere, on the CDRPA and Coburn's hold, could only be good. Letters to the editor of local papers, national papers, Newsweek, whatever. I didn't do the legwork to hook up with this reporter in DC but IM Hopeful did. Maybe she'll chime in, add some info on how she arranged all that. I mainly just answered the phone.

    Here's the link to the last article:

    http://www.tulsaworld.com/news/artic..._A1_spanc44775

    ETA again-Wow, I hate the photo they used w/ that article. But at least I looked angry LOL.
    Last edited by betheny; 08-02-2008 at 08:13 PM.

  10. #190
    Senior Member Norm's Avatar
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    Betheny, Please post the new article when its released.
    "Some people say that, the longer you go the better it gets the more you get used to it, I'm actually finding the opposite is true."

    -Christopher Reeve on his Paralysis

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