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    I am not sure now who the appropriate group or person at the CDC is now... when the bill was first being discussed, I knew that they were very much involved; the CDC is the organization that first gave the Reeve Foundation a grant to provide information to the community.
    The CDC still manages and oversees the PRC as well as NeuroRecovery at the Reeve Foundation. I would strongly urge you to communicate with Joe Canose at the Christopher and Dana Reeve Foundation before lobbying the CDC. The CDC is a complicated agency and not one that lobbying will necessarily help but most likly hinder. There are many works in progress and I would hate to see them be unraveled.

    The Reeve grant comes from Health and Human Services and is managed by the CDC.
    Last edited by cheesecake; 28 Mar 2009, 12:03 PM.
    Every day I wake up is a good one

    Comment


      From 2003 to 2006, the Republicans controlled both the Senate and House. They would not allow the bill out of committee for a vote in either the Senate or House.
      In November 2006, the DC 9 traveled to push for the bill to be heard in Lame DUck session. Boston Dad had a call in the day, and the voices were heard.
      The Act was brought up in the Lame DUck session for a vote, which many told us was unheard of and impossible. Senator Enzi office granted us a meeting, one that was quite emotional. After the meeting, Enzi allowed the Bill to be heard in the Lame Duck session as did the House. It passed the House but was held from a vote in the Senate. This was a pivotal point, getting it to the floor in a lame duck session. Congress and the Senate knew the Community was serious. One Congressional aide told us it was "not easy" to which Kris Gulden replied, "I will tell you about not easy" and described what it took to get there that day.

      It is easy to point the blame, name names, etc right now but in the long run, it will not help. The Paralysis Community needs to stand united, to speak strongly and clearly, to know our obstacled but to work around them instead of point the finger.

      This has been a long road coming and much has been learned in the process. I have been working this Act since 2002 when it was first drafted. Lets draw on the lessons of old, focus on being bipartisan, and Go Forward, having learned from the past. Political parties in DC shift every 2 years, lets not alienate any group or person, we never know when we may need them.
      Every day I wake up is a good one

      Comment


        Cheesecake,
        I know you are right but I just can't seem to conquer the vitriol. If you'll indulge me this moment of venting maybe I can get it out of my system. At one point when people were speculating that it was Coburn relenting rather than congenial math that let the bill pass the Senate, and speaking about thanking him, it made me angry. Do you thank your brother-in-law for stopping beating your sister, or still want to shoot him?

        Comment


          Originally posted by cheesecake View Post
          Lets draw on the lessons of old, focus on being bipartisan, and Go Forward ~
          Amen to that.

          And before it gets lost, I just want to repeat what Wise said above:

          Naomi Kleitman is a strong advocate of spinal cord injury research at NINDS. She has given many talks to our community and it would be useful to get her advice. At NICHD, the key committee is the National Advisory Board of Medical Rehabilitation Research, which funds rehabilitation research at NIH. That board has several representatives of the disability community and I know that they are very interested in hearing what the community wants.
          So, I'm channeling my distaste for Coburn into new tracks:

          1. finding out what Naomi Kleitman would advise
          2. reaching out to someone at the national advisory board of medical rehab research who would be a good contact point for us, the community.

          I also wanted to say thanks for pushing this all those years . . . and I really love your new signature.

          Comment


            Originally posted by cheesecake View Post

            It is easy to point the blame, name names, etc right now but in the long run, it will not help. The Paralysis Community needs to stand united, to speak strongly and clearly, to know our obstacled but to work around them instead of point the finger.

            This has been a long road coming and much has been learned in the process. I have been working this Act since 2002 when it was first drafted. Lets draw on the lessons of old, focus on being bipartisan, and Go Forward, having learned from the past. Political parties in DC shift every 2 years, lets not alienate any group or person, we never know when we may need them.
            Maybe getting the 'loose cannon' in the politics forum settled down might help with bipartisanship.

            Comment


              Originally posted by Random View Post
              Cheesecake,
              I know you are right but I just can't seem to conquer the vitriol. If you'll indulge me this moment of venting maybe I can get it out of my system. At one point when people were speculating that it was Coburn relenting rather than congenial math that let the bill pass the Senate, and speaking about thanking him, it made me angry. Do you thank your brother-in-law for stopping beating your sister, or still want to shoot him?
              Given that I only have sister in laws..........

              I never said we needed to thank Coburn, but I do not think pointing a finger and alienating the Republicans will benefit the paralysis community in the long run. We need to be bi-partisan. Without Spectur and Bilarikus remaining steady by our side, we would never have gotten out of the starting block.

              CR was a huge believer in bi-partisan action. I guess I simply see nothing gained by spewing hostility towards the Senator from OK or to the Republicans either.
              Every day I wake up is a good one

              Comment


                hey kate,

                was thinking the same and see some council members are from Chicago area.

                might be worth inviting them to W2W

                http://www.nichd.nih.gov/about/overv...visory/nmrrab/
                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."

                Comment


                  Hey, I think Leo is onto something here. It sure wouldn't hurt to invite all the council members to W2W with a professionally drafted invitation would it?
                  When you look through their areas of expertise...It'd be great if any one of them could attend!
                  http://spinalcordresearchandadvocacy.wordpress.com/

                  Comment


                    Reflections.

                    "There is no question that we all still feel Christopher's loss so keenly right now. But seeing everyone here today, I know this is the right moment to transform our grief into hope and work together to pass the Christopher Reeve Paralysis Act, in his honor," said Dana Reeve, chairman of the Christopher Reeve Paralysis Foundation. April 12, 2005

                    Yes, it was the right moment, the tipping point, for what we will all celebrate tomorrow.

                    I thought that at this time it would be helpful for all of us to reflect back on
                    April 12, 2005, the “Spring into Action” rally held in Washington D.C.

                    The dedicated work and commitment of numerous advocates preceded that day. Many, like Christopher, advocated until they could no more. Advocates like our beloved Leo have never wavered. I know that these early cure advocates dreamed of one day holding a rally in DC, dreamed of stepping out of the shadows and demanding to be seen and heard. On April 12, 2005 that dream became reality.

                    That rally came about because the loss of Christopher Reeves, the advocate of all advocates, left us, and left us with the ringing words of, “Go forward” The community came together from all over the world, picked up the torch and went to DC.

                    (May I suggest that you visit Dr. Young’s posting where he collected newspaper articles of that day and the stories of many of the advocates who made the trip)
                    /forum/archive/index.php/t-60668.html


                    And so it was, and so tomorrow, when the bill is signed and made into law I feel it is important to say thank you to those with us and those who are not, who gave so much of themselves for the betterment of everyone.
                    With a special thank you to Dr. Young and Arthur Ullian for visiting with Christopher Reeve at Kessler and asking him to take a leadership role in the search for a cure.

                    As Christopher wrote in his book “Nothing Is Impossible”,
                    “As we huddled together in a corner of the visitors’ room, they drove home the point that they had gone as far as they could. It would take leadership of a public figure to raise awareness and make a difference in the lives of victims without a voice.”
                    Christopher accepted and we all know the rest of the story.

                    As we celebrate this giant step toward the cure of paralysis, let us take a moment to remember Chris and Dana, say a little pray for their families, say thank you to our courageous and unyielding supporters on Capitol Hill and give your selves a pat on the back.

                    There is a lot more work ahead but for now, enjoy the moment.

                    Peace
                    Last edited by bostondad; 29 Mar 2009, 6:53 PM.

                    Comment


                      More reflections

                      I posted this on March 10, 2006 a few days after Dana Reeve passed away. Thought it was worth revisiting.

                      Christopher and Dana built a wonderful foundation to push for research as well as quality of life issues for everyone who has paralysis.

                      Each and everyone here is the face of paralysis, you may be the person with SCI, a best friend, parent,child, sibling, or concerned neighbor. Perhaps you are a medical professional or researcher. Regardless of your connection to paralysis, you are a face that can make it real for the general public.

                      It is up to each and every one of us to be ambassadors for paralysis, to spread the word and to effect change. We each have a story, some very gripping, and all of them worth hearing and being told.

                      We can not sit back and wait for someone to be our voice, to champion our cause. We need to do that ourselves. Become knowledgeable, learn the facts, try to understand the politics as well as the science involved. Then, speak from your heart, frequently and passionately.

                      The symposium in DC is a few months away. Many can't attend and I understand that, traveling with SCI is difficult. Even if you aren't there, help us pave the road to the Capitol by writing letters, calling Senators and Congressmen, telling your story. Make us a voice to be heard and reckoned with.

                      Honor both Christopher and Dana by carrying their work forward. Lets show Will, Matthew, and Alexandra how much their parents efforts and sacrafices meant to us.

                      Go Forward !

                      Thanks you everyone for responding to the call for action. Your voices were heard and change is on the horizon
                      Every day I wake up is a good one

                      Comment


                        Originally posted by cheesecake View Post
                        I posted this on March 10, 2006 a few days after Dana Reeve passed away. Thought it was worth revisiting.

                        Christopher and Dana built a wonderful foundation to push for research as well as quality of life issues for everyone who has paralysis.

                        Each and everyone here is the face of paralysis, you may be the person with SCI, a best friend, parent,child, sibling, or concerned neighbor. Perhaps you are a medical professional or researcher. Regardless of your connection to paralysis, you are a face that can make it real for the general public.

                        It is up to each and every one of us to be ambassadors for paralysis, to spread the word and to effect change. We each have a story, some very gripping, and all of them worth hearing and being told.

                        We can not sit back and wait for someone to be our voice, to champion our cause. We need to do that ourselves. Become knowledgeable, learn the facts, try to understand the politics as well as the science involved. Then, speak from your heart, frequently and passionately.

                        The symposium in DC is a few months away. Many can't attend and I understand that, traveling with SCI is difficult. Even if you aren't there, help us pave the road to the Capitol by writing letters, calling Senators and Congressmen, telling your story. Make us a voice to be heard and reckoned with.

                        Honor both Christopher and Dana by carrying their work forward. Lets show Will, Matthew, and Alexandra how much their parents efforts and sacrafices meant to us.

                        Go Forward !

                        Thanks you everyone for responding to the call for action. Your voices were heard and change is on the horizon
                        Wonderful. Thank you for reposting. Wise.

                        Comment


                          And now it's law

                          President Obama signed the bill today.
                          Doh!

                          Comment


                            President Obama's signing statement on HR 146

                            Includes several paagraphs on CDRPA. I have attached the entire statement, and pasted the section on CDRPA below.


                            Now, the legislation I'm signing today also makes progress on another front for which many Americans have long waited.

                            The Christopher and Dana Reeve's Paralysis Act is the first piece of comprehensive legislation specifically aimed at addressing the challenges faced by Americans living with paralysis. (Applause.) Many folks and organizations from across the disability community worked hard to get this bill passed, and we are grateful to each of you for bringing us that much closer to providing all Americans with disabilities a full, fair and equal opportunity to achieve the American Dream.

                            This act creates new coordinated research activities through the National Institutes of Health that will connect the best minds and best practices from the best labs in the country, and focus their endeavors through collaborative scientific research into the cure for paralysis, saving effort, money, and, most importantly, time.

                            It promotes enhanced rehabilitation services for paralyzed Americans, helping develop better equipment and technology that will allow them to live full and independent lives free from unnecessary barriers. And it will work to improve the quality of life for all those who live with paralysis, no matter what the cause.


                            That's the mission of the Christopher and Dana Reeve Foundation. In the lobby of their facility in New Jersey sits Christopher’s empty wheelchair. And his son, Matthew Reeve, was once asked if the sight of it ever saddened him, and he replied no. He said, "Empty chairs -- that was Dad's goal," he said. "We hope there will be many more of them."

                            Matthew is here with us today. And the legislation I'm about to sign makes solid progress toward the realization of that hope and the promise of a brighter future.

                            Comment


                              http://www.whitehouse.gov/the_press_...anagement-Act/

                              We made it all the way to the BIG WHITE HOUSE BABY!

                              Way to go fellow advocates!

                              Comment


                                Lordy, I just got veclempted again. Finally, after so long.

                                Thank you Cubs, the CRF and all of those involved for remaining steadfast after so many setbacks. Chris and Dana would be proud. I'm glad his son attended.

                                Originally posted by cubsfandc View Post
                                Includes several paagraphs on CDRPA. I have attached the entire statement, and pasted the section on CDRPA below.


                                Now, the legislation I'm signing today also makes progress on another front for which many Americans have long waited.

                                The Christopher and Dana Reeve's Paralysis Act is the first piece of comprehensive legislation specifically aimed at addressing the challenges faced by Americans living with paralysis. (Applause.) Many folks and organizations from across the disability community worked hard to get this bill passed, and we are grateful to each of you for bringing us that much closer to providing all Americans with disabilities a full, fair and equal opportunity to achieve the American Dream.

                                This act creates new coordinated research activities through the National Institutes of Health that will connect the best minds and best practices from the best labs in the country, and focus their endeavors through collaborative scientific research into the cure for paralysis, saving effort, money, and, most importantly, time.

                                It promotes enhanced rehabilitation services for paralyzed Americans, helping develop better equipment and technology that will allow them to live full and independent lives free from unnecessary barriers. And it will work to improve the quality of life for all those who live with paralysis, no matter what the cause.


                                That's the mission of the Christopher and Dana Reeve Foundation. In the lobby of their facility in New Jersey sits Christopher’s empty wheelchair. And his son, Matthew Reeve, was once asked if the sight of it ever saddened him, and he replied no. He said, "Empty chairs -- that was Dad's goal," he said. "We hope there will be many more of them."

                                Matthew is here with us today. And the legislation I'm about to sign makes solid progress toward the realization of that hope and the promise of a brighter future.
                                Last edited by antiquity; 30 Mar 2009, 6:39 PM.

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