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    Originally posted by aton
    Has anyone heard anything more about the CDRPA since last week or are the Senators still talking about it behind close doors?
    The chances of it passing before the year is out are slim. The Senate is out of session right now and they'll be back briefly for what amounts to a lame duck session after the election, from my understanding.

    Try, try again.
    ...it's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.

    Comment


      does this look ok?

      also would be interesting to see how many opponents did the same thing?

      Hello John,

      I received a letter from you about the passage of the ALS Registry Act, how you supported it and were a co-sponsor. I am very happy to finally see this needed legislation enacted as I have many friends with ALS and have lost good friends do to it.

      However your action towards this legislation seems hypocritical to what I’ve been told by you and your aides for the past five years on the Christopher Reeve Paralysis Act. As you know by now I have been paralyzed from the shoulders down since 1976. However despite this in the past four years I have made trips to DC to meet with your aides advocating for passage of the CRPA..

      During these visits and in numerous emails back and forth with your aides I have heard some of the concerns you had. Starting with you don’t co-sponsor legislation directing the N.I.H. on how to do their business, 2 you don’t like to support or co-sponsor disease specific conditions, not taking sides sort of speak, 3. Financial concerns or budget off sets; however as you can see in the accompanied letter the CDRPA will invest to quickly save money according to the experts.

      So John maybe now you can understand my confusion in regards to your action on the ALS Registry Act.

      I look forward to your reply and do hope that maybe you will have a change of opinion on the CDRPA also.

      Sincerely, Leo
      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


        Leo, this is very well-written. I think you do a fine job of laying out all of their concerns and then dismissing them. It may be helpful to others to attach the accompanying letter.

        Again well done.

        Comment


          To nice :-) But Leo, great. I don't know what to say. I just feel we must do more. SCI'eds are dying (some are) thus one have to push hard. So thanks. -Some (ancient rehab facilities) really have to go full out and save lives, and not making it just another working place to get some income.
          Last edited by Leif; 12 Nov 2008, 4:20 PM.

          Comment


            Lame Duck Session is not not a dead end

            Originally posted by Steven Edwards View Post
            The chances of it passing before the year is out are slim. The Senate is out of session right now and they'll be back briefly for what amounts to a lame duck session after the election, from my understanding.

            Try, try again.
            Steven: In 2006, 9 of us traveled to Washington DC during a lame duck session and we were able to get the CDRPA thru the House as well as the Senate. Unfortunately, a lone Senator held the bill up that you.

            If anyone wants to try a run at DC next week, I am game.
            Every day I wake up is a good one

            Comment


              Originally posted by Leo View Post
              hey cheesecake,

              good to hear from u

              any scoop on what CRF plans are 4 next year CDRPA
              I suggest that you call the VP of Legislative activities for an update.
              Every day I wake up is a good one

              Comment


                Leo: Obviously the goal was to push forward: http://www.christopherreeve.org/site...033&ct=6493597
                Every day I wake up is a good one

                Comment


                  It sounds and I hope the senate will act today in a posative way on CDRPA

                  C-SPAN2 between 11 central and who knows

                  many of u have earned the right to watch

                  let others know that might not check in here
                  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


                    Thanks for posting the update Leo...You beat me to it.

                    I have it on here. Those of you at work or not in front of a TV you can watch it online.
                    http://www.c-span.org/Watch/C-SPAN2_rm.aspx

                    Today is the day!
                    Paralyze resistance with persistence.
                    T-12

                    Comment


                      It's on...here comes Coburn...
                      Paralyze resistance with persistence.
                      T-12

                      Comment


                        YEAH IT PASSED THE SENATE!!!

                        Those of you who missed it you can view the video here:
                        http://www.c-spanarchives.org/congre...d1224d1b0ddf0b

                        The above link will only work for today.

                        After that http://www.c-spanarchives.org/congre...de/3&year=2009
                        Click on Jan 15, 2009
                        Select SENTATE (Default is House)
                        Scroll down to 12:00 which is where it starts.

                        Here is the verbiage of S.22: http://dpc.senate.gov/dpc-new.cfm?doc_name=lb-111-1-1
                        CDRPA is under Title XIV (towards the bottom)
                        Paralyze resistance with persistence.
                        T-12

                        Comment


                          Hurray!!

                          Hurray!!

                          Wise.

                          Comment


                            This

                            is a red letter day!

                            If you have a second, you might send your thanks to Senator Tom Harkin of Iowa, who has been so determined to fight this fight for us.

                            And while you're at it, cc Senator Tom Coburn of Oklahoma, who has been so determined to make sure this day never came. He loses, finally.

                            Comment


                              im on it.......

                              and double to coburn

                              wwwaaaahhhooooo
                              Many Blessings,
                              Josh


                              So we can say with confidence, The Lord is my helper, so I will have no fear. What can mere people do to me?" Hebrew13:6

                              Comment


                                That makes my day!! Yahooooo

                                Comment

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