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    No offense intended at all to anyone, any posts, but this is one of the BEST POSTS I've read during my 5 years or so on CareCure. Congratulations to everyone and thanks for all of your hard work.

    Comment


      Originally posted by betheny View Post
      Offtopic-

      Good work, fellow advocates! We need to all be patting ourselves and our buddies on the back. Our 10,000 letters, calls and visits didn't go down The Black Hole after all! All the money we spent on trips to DC, all the politicians that invested their time in supporting us...This feels like a dream to me.

      I read a stat once, wish I could remember exactly. It said that only 1 in a thousand bills that are introduced to Congress are ever passed into law, I think? We beat the odds on a phenomenal scale with this one, for sure.

      I wish Christopher and Dana Reeve were here to see it. I never met him but she was so proud of us at the first rally, when she spoke about how much it was needed and how she knew it was really hard for us to travel to DC. And I wish Dogger was here...the only Aussie that ever went to DC to support us in lobbying for the CDRPA.

      Don't mean to be a downer. It sucks when people deserve to see something through and they don't get to...

      I was there the first time this Act was announced, with Chris and Dana on Chris' 50th birthday, one of a small crowd. I was present again the next time it was announced, with Chris and Dana again. I swore after we lost Chris and then Dana that I would see this Act through. I am so happy but still holding batted breath.

      I do believe Chris and Dana are smiling on us, happy that the community moved forward. Sue, Betheny, Marilyn, Bob, Chuck, Todd, Scott P and all the others, thank you
      Every day I wake up is a good one

      Comment


        I have two boys grinning from ear to ear.

        My son and I have made numerous trips to meet with Senators and Congressmen to get this Act passed. He wrote this essay as a "leave behind" on our visits 2 years ago. I was really proud of him and wanted to share this. I hope it gives you insight as to why this Act has been so important to my family. I have edited some info for privacy reasons. Please note that this was written before Dana's name was added to the Act.

        Sean T. M.

        Maryland

        Hi, my name is Sean M and I am 14 years old. I am in the 8th grade at SJA School in Maryland. My mom has a spinal cord injury. I have never known her without the paralysis because she was hurt before I was born. My mom does things that most moms do but she has to find new ways to do them. Something’s she can’t do and I wish she could. When we went snow inner tubing she couldn’t get up and down the inner tube slopes. She did get to ski though using a bi-ski.



        My mom helps other people who have spinal cord injuries. She listens to their stories and she tries to find them help, rehabilitation and she lets them know there is hope. Sometimes I listen when she takes calls. I want a job like her when I grow up, helping people. My mom hopes that one day there will not be a need for jobs like she has. I hope so too.



        I have a type of paralysis too, cerebral palsy. Today, most people don’t notice it and I don’t either. For 9 years I got most of my food through a tube in my stomach because I could not swallow. The paralysis messed up the muscles in my throat. When I was one, the doctor told my mom and dad I had spastic quadraparisis. The doctors told them all the things I would never do. My parents never gave up hope and worked with me a lot. Today I do lots of things, I play baseball, football, and I am in a regular class at school and have lots of friends. The doctors said I would not walk, have very little use of my hands and my speech would be hard to understand. My mom and dad just didn’t listen.



        I want you to get the Christopher Reeve Paralysis Act out for a vote and to make it happen. Christopher Reeve always made things happen and he gave people hope. The CRPA will help with research, resources, and rehabilitation

        Paralysis hits the whole family, even the kids. My life is good but I know my mom hopes for more. Please help it happen. Thank you for meeting with our group today.



        GO FORWARD,

        Sean
        Every day I wake up is a good one

        Comment


          Sorry..there are a couple of us unsure in the chat room on what this act really means for us? We obviously know its a step forward in the right direction, but what is it actually doing for us?
          Life is like a box of chocolates, you never know what you're gonna get.

          Comment


            Now, ultimately only $25 million came with this bill (I think. Everything I read says something different!) That is open to further negotiation. As Leo says, you get the bill passed, the funding follows. He also says that it is nearly impossible to kill government programs if you can just get them going. So this is just the beginning, but it's a huge step. The main goal for many of us (at least at u2p) was to get a clinical trial network rolling. That is the fastest way to get therapies out of the lab and to the bedside. Wise has always felt that this bill was our best hope for an American Clinical Trial Network for paralysis. I'm not a political genius. Since Wise and Dr. McDonald said it was our best chance, I figured it was.

            This is the first bill ever passed that directed funding to paralysis, specifically. It should eliminate redundant research, so things won't be repeated over and over, and that saves money.

            And in the year to come it should dovetail nicely with the upcoming ESC research, I think.

            The Christopher and Dana Reeve Paralysis Act has three components that support and enhance paralysis research, rehabilitation, and quality of life programs:

            · Paralysis Research - Expands research on paralysis at the National Institutes of Health (NIH). This will encourage collaborative research by connecting scientists conducting similar work to further enhance understanding and speed discovery of better treatments and cures.

            · Paralysis Rehabilitation and Care - Builds on research to enhance daily function for people with paralysis including a Clinical Trials Network to measure effectiveness of certain rehabilitation tactics and encouraging shared findings on paralysis to improve rehabilitation.

            · Improving Quality of Life for Persons with Paralysis and Other Physical Disabilities - Works with the Centers for Disease Control and Prevention (CDC) to improve the quality of life and long-term health status of persons with paralysis and other physical disabilities.
            Last edited by betheny; 16 Jan 2009, 12:05 AM.
            Blog:
            Does This Wheelchair Make My Ass Look Fat?

            Comment


              Job well done everyone. The day has finally come. Yes, it's turning around.
              Hang on, here we go!!!!!!!!!!!!!!!!
              http://spinalcordresearchandadvocacy.wordpress.com/

              Comment


                Originally posted by cheesecake View Post
                I have two boys grinning from ear to ear.

                My son and I have made numerous trips to meet with Senators and Congressmen to get this Act passed. He wrote this essay as a "leave behind" on our visits 2 years ago. I was really proud of him and wanted to share this. I hope it gives you insight as to why this Act has been so important to my family. I have edited some info for privacy reasons. Please note that this was written before Dana's name was added to the Act.

                Sean T. M.

                Maryland

                Hi, my name is Sean M and I am 14 years old. I am in the 8th grade at SJA School in Maryland. My mom has a spinal cord injury. I have never known her without the paralysis because she was hurt before I was born. My mom does things that most moms do but she has to find new ways to do them. Something’s she can’t do and I wish she could. When we went snow inner tubing she couldn’t get up and down the inner tube slopes. She did get to ski though using a bi-ski.



                My mom helps other people who have spinal cord injuries. She listens to their stories and she tries to find them help, rehabilitation and she lets them know there is hope. Sometimes I listen when she takes calls. I want a job like her when I grow up, helping people. My mom hopes that one day there will not be a need for jobs like she has. I hope so too.



                I have a type of paralysis too, cerebral palsy. Today, most people don’t notice it and I don’t either. For 9 years I got most of my food through a tube in my stomach because I could not swallow. The paralysis messed up the muscles in my throat. When I was one, the doctor told my mom and dad I had spastic quadraparisis. The doctors told them all the things I would never do. My parents never gave up hope and worked with me a lot. Today I do lots of things, I play baseball, football, and I am in a regular class at school and have lots of friends. The doctors said I would not walk, have very little use of my hands and my speech would be hard to understand. My mom and dad just didn’t listen.



                I want you to get the Christopher Reeve Paralysis Act out for a vote and to make it happen. Christopher Reeve always made things happen and he gave people hope. The CRPA will help with research, resources, and rehabilitation

                Paralysis hits the whole family, even the kids. My life is good but I know my mom hopes for more. Please help it happen. Thank you for meeting with our group today.



                GO FORWARD,

                Sean
                cheese,
                sitting here with tears streaming down my face. on my behalf, please go and squeeze the heck out of sean and tell him that there is a middle aged women in california who thinks he absolutely rocks. and after he protests and squirms away, lets all take a deep and grateful breath that the tide is turning....thankfully because of you, sean and everyone who has worked so hard in so many way.

                beachlover
                Last edited by beachlover; 16 Jan 2009, 12:26 AM. Reason: i can't type....

                Comment


                  Thank you to each of you who have worked so long and so hard to make this happen.
                  My blog: Living Life at Butt Level

                  Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

                  "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

                  Dawna Markova Author of Open Mind.

                  Comment


                    Sean really does seem awesome. We should have unleashed him on Coburn years ago!
                    Blog:
                    Does This Wheelchair Make My Ass Look Fat?

                    Comment


                      Colburn wasn't able to stop this because it was lumped in with the Land bill, right?

                      And is the final step the Presidents signature?
                      "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

                      Comment


                        Originally posted by Norm View Post
                        Colburn wasn't able to stop this because it was lumped in with the Land bill, right?

                        And is the final step the Presidents signature?
                        Norm,

                        Coburn could not stop the bill because over 60 Senators voted for cloture (end of debate on the bill) and he could not filibuster the bill. A total of 72 Senators voted for S.22. Senator Coburn abstained [source]http://www.senate.gov/legislative/LIS/roll_call_lists/roll_call_vote_cfm.cfm?congress=109&session=2&vote =00115[/source]

                        The House of Representative bill is H.R. 307.
                        1. H.R.307 : 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, and for other purposes.
                        Sponsor: Rep Baldwin, Tammy [WI-2] (introduced 1/8/2009) Cosponsors (3)
                        Committees: House Energy and Commerce
                        Latest Major Action: 1/8/2009 Referred to House committee. Status: Referred to the House Committee on Energy and Commerce.
                        The co-sponsors are

                        Rep Bilirakis, Gus M. [FL-9] - 1/8/2009
                        Rep Bono Mack, Mary [CA-45] - 1/8/2009
                        Rep Langevin, James R. [RI-2] - 1/8/2009


                        You can find out more about the bill's status from http://thomas.loc.gov/

                        Wise.
                        Last edited by Wise Young; 19 Jan 2009, 7:30 AM.

                        Comment


                          Can anyone tell me how this looks, what “held at the desk” means?

                          What are the chances it now will be funded?

                          And a semantic question: How do we ask money be put behind it? Does asking that it ‘be funded’ mean only that they actually appropriate the funds the bill spells out, or that they add appropriations not yet called for in the bill?

                          Comment


                            Randy, NIH funding can only be appropriated in the Heath and Human Services budget and that is controlled by Senator Harkin's committee. He is a strong advocate for spinal cord injury research and has a spinal-injured nephew but it would help him to receive a flood of letters from people and families with spinal cord injury, that he can show to his colleagues in support of a larger amount of funding for spinal cord injury research at NIH. I believe that this should be one of the targets of the Rally in April/May: funding for the CDRPA.

                            Wise.

                            Originally posted by Random View Post
                            Can anyone tell me how this looks, what “held at the desk” means?

                            What are the chances it now will be funded?

                            And a semantic question: How do we ask money be put behind it? Does asking that it ‘be funded’ mean only that they actually appropriate the funds the bill spells out, or that they add appropriations not yet called for in the bill?

                            Comment


                              Finially and what good news. I never thought, at the first rally in 05, it would take this long. It is bittersweet because Christopher and Dana are not here.

                              Comment


                                Thanks Wise. Should we write now or is there another more effective time? Is there anyone you would suggest we write in addition to Senator Harkin?

                                Comment

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