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    #31
    Originally posted by Leo
    hi chaz,

    funny you should ask cuz for a couple weeks now i had been meaning to ask you to do a favor.

    the Medical Research = Quality of Life thread, will you use my letter or your own and drop the folks i listed and see if you can get a reply?

    About NSCIA, I was pleased to see they have the SCREA on their front page of the web site, http://www.spinalcord.org/

    rock on
    hey Leo -- here's a copy of the letter I sent to the national headquarters... I kind of rift off of what you wrote earlier. Do you happen to have a link to that medical research equals quality of life thread... I'll try to do a search anyways.
    I did hear back on my initial letter -- but on my follow-up I've heard nothing -- still waiting.

    Cheesecake -- I can contact at my local chapter -- but everyone on Massachusetts is on board... well at least I think.
    ( I sent this 5/29)

    Dear (xxxxxx -- the chapter president),
    I am writing to you because I could not find a place to comment on the
    direction and mission of the National Spinal Cord Injury Association. I was
    very taken back by your extensive credentials and successful lobbying
    efforts. As a C4/5 quadriplegic I'm incredibly thankful and indebted to
    people such as yourself for your hard work lobbying for the ADA and other
    quality-of-life initiatives. I'm now coming up to my fifth year living in a
    wheelchair and have subsequently been active locally with ADA issues and
    nationally with research legislation. I've been reading the quarterly issue
    of your magazine and subsequent e-mails and would like to point out an area
    that is desperately in need of attention.

    Currently, the United States is spending over $80 billion taken care of
    people with spinal cord injury yet our community only receives a paltry 80
    million per year in research and actually between year of 2005 and 2006 NIH
    funding was cut to around 65 million per year. These facts are hard to
    stomach, I truly believe research for both assisted technology and
    restorative therapies will help improve the quality of life of many people
    living with disabilities -- yet the national chapter representing us has
    not(from what I have read) alerted us to these facts.

    The twice in the past three years I have traveled down to Washington, DC on my own dime
    to help advocate and lobby for the Christopher Reeve paralysis act and for
    the stem cell enhancement act. As you know there is strong opposition to
    stem cell enhancement although, the Christopher Reeve paralysis act has had
    little opposition yet also little support from our community -- and I
    believe this is because we've not been informed or aware of the importance
    of this legislation towards rehabilitation -- and I am not speaking justabout
    stem cells but also ambulation therapies and other modalities.

    As a young man, I hopefully have many more years living as a member of your
    organization and I can only implore you and others to help support and push
    other legislation that will not just help with accessibility issues but also
    allow someone like me the ability to have extensive rehab and maybe in the
    future a restorative therapy. I thank you in advance for your time and
    consideration of my thoughts.
    Sincerely,
    Chaz Southard

    Comment


      #32
      link to research equals quality of life thread

      /forum/archive/index.php/t-81965.html

      I think it is closed for comments now though....

      Comment


        #33
        Three more cosponsors!

        Rep Barbara Lee CA
        Rep Maurice Hinchey NY
        Rep Stephen Lynch MA
        "Our lives begin to end the day
        we become silent about things that matter."
        - Martin Luther King Jr

        Comment


          #34
          I feel like taking a bubble bath, IMHopeful is on the job. This is great, I updated that cosponsor list on Carecure for years!
          Blog:
          Does This Wheelchair Make My Ass Look Fat?

          Comment


            #35
            Pennsylvania Senators Casey and Specter are now cosponsors. Representatives Tim Holden, Charlie Dent and Patrick Murphy so far.

            Comment


              #36
              I saw that, VJS--excellent! I'm confident Sen. Amy Klobuchar (D-
              MN) will join the co-sponsor list soon. I received a call from her Health Aide today to let me know he has not yet had a chance to speak with her about it, but plans to very soon.

              Significant progres, all--during the 109th congress, there were 33 co-sponsors over a 2 year span. We are edging close to that in a mere 2 months in the 110th congress.
              Please submit your photo and story of hope:

              http://bridges2hope.unite2fightparalysis.org/


              http://unite2fightparalysis.org/

              Comment


                #37
                Bethany must still be up to her eyeballs in bubbles!
                So, I'll post the good news.

                Three more from California!

                Rep Berman, Howard L. [CA-28] - 7/12/2007Rep Capps, Lois [CA-23] - 7/12/2007Rep Harman, Jane [CA-36] - 7/12/2007

                Still so much more work to do. I made calls from my son's hospital room this week. It seemed like an appropriate use of my time. His view was of the BioResearch building that houses the group that is connected to the CDRPF NeuroRecovery Network. I politely explained where I was calling from and asked for their support. Hopefully, I will have some Ohio names to add to this list in the next couple weeks.

                Chuck and Chaz, if you could share what made your effort so successful, it would be useful for others that are advocating.
                "Our lives begin to end the day
                we become silent about things that matter."
                - Martin Luther King Jr

                Comment


                  #38
                  S 1183 scheduled to be discussed in the Senate...

                  Great news--This bill is set to be discussed in the Senate Health, Education, Labor, and Pensions (HELP) Committee on Wednesday, 7/25/08.

                  http://help.senate.gov/
                  Please submit your photo and story of hope:

                  http://bridges2hope.unite2fightparalysis.org/


                  http://unite2fightparalysis.org/

                  Comment


                    #39
                    thanks Sue,

                    this is great......finally

                    i hope some one will be able to give us a report

                    a good idea to start a call in to those committee members???
                    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


                      #40
                      Originally posted by Leo
                      thanks Sue,

                      this is great......finally

                      i hope some one will be able to give us a report

                      a good idea to start a call in to those committee members???
                      No--calls to committee members are not needed at this time and actually may hinder the process. Let's wait and see what transpires, but, I understand there is great optimism it will go well. Holding my breath here--we should know more by days end tomorrow.
                      Please submit your photo and story of hope:

                      http://bridges2hope.unite2fightparalysis.org/


                      http://unite2fightparalysis.org/

                      Comment


                        #41
                        I would like to help here in Florida but have no clue where to start. If someone would help me with whom I should call or write letters to here in Florida I will. Are ppl calling and asking if their senators are going to be sponsoring this bill or writing letters? I need everyone one that I should call or write to. and I can start. Is there a sample letter I could start with? What questions do I ask, thank you.
                        Cindy Waters
                        mom to Anthony, right c5, left c4 (24yo)
                        injury march 2003

                        Comment


                          #42
                          Originally posted by waters3
                          I would like to help here in Florida but have no clue where to start. If someone would help me with whom I should call or write letters to here in Florida I will. Are ppl calling and asking if their senators are going to be sponsoring this bill or writing letters? I need everyone one that I should call or write to. and I can start. Is there a sample letter I could start with? What questions do I ask, thank you.
                          Hi Cindy,

                          I would be happy to assist you. Please contact me at susan@unite2fightparalysis.org .

                          Thanks,
                          Susan
                          Please submit your photo and story of hope:

                          http://bridges2hope.unite2fightparalysis.org/


                          http://unite2fightparalysis.org/

                          Comment


                            #43
                            CDRPA Heads to Full Senate Vote

                            The Christopher and Dana Reeve Paralysis Act (CDRPA) passed the Senate Helath, Education, Labor and Pensions (HELP) committee yesterday, Wednesday, July 25th. The bill will now move to the full Senate for consideration. This is a tremendous milestone. A huge thank you to all of you whom have worked so tirelessly on advancing this legislation.


                            "HARKIN CALLS ON CONGRESS TO PASS THE CHRISTOPHER REEVE PARALYSIS ACT
                            Legislation passes committee, will be considered by full Senate this fall
                            WEDNESDAY, JULY 25, 2007


                            WASHINGTON, D.C. - Senator Tom Harkin (D-IA) today applauded the passage of the Christopher and Dana Reeve Paralysis Act (CDRPA) out of the Health, Education, Labor and Pensions Committee. Harkin introduced this bill to advance collaborative research in paralysis and improve quality of life for people living with paralysis and mobility impairments from any cause including stroke, ALS, spinal cord injuries, and others."

                            "There is no time to waste. Young soldiers are returning from Iraq with spinal cord injuries, facing a lifetime of disability," said Harkin. "Some two million Americans are living with paralysis of the arms or legs. Hundreds of thousands are living with multiple sclerosis. They cannot wait. I can think of no better way to honor Chris and Dana's memory than for Congress to pass this legislation."

                            http://harkin.senate.gov/news.cfm?id=279807
                            Please submit your photo and story of hope:

                            http://bridges2hope.unite2fightparalysis.org/


                            http://unite2fightparalysis.org/

                            Comment


                              #44
                              3 reps in august

                              we can do better

                              Rep Napolitano, Grace F. [CA-38] - 8/1/2007
                              Rep Altmire, Jason [PA-4] - 8/1/2007
                              Rep Kildee, Dale E. [MI-5] - 8/1/2007
                              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


                                #45
                                Originally posted by Leo
                                3 reps in august

                                we can do better

                                Rep Napolitano, Grace F. [CA-38] - 8/1/2007
                                Rep Altmire, Jason [PA-4] - 8/1/2007
                                Rep Kildee, Dale E. [MI-5] - 8/1/2007

                                Hey, Leo--there could be more. The list can't be updated while congress is not in session. Hopefully, there will be a bunch in September.
                                Please submit your photo and story of hope:

                                http://bridges2hope.unite2fightparalysis.org/


                                http://unite2fightparalysis.org/

                                Comment

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