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    #31
    Originally posted by Clipper:

    I don't think we need signatures, per se. As long as we have names, hometown and maybe injury level, date of injury, relation to injured person, etc. I think we can get at least one person from each state to lend us their name pretty easily. Posting in the chapters section or even going through Quest for a Cure would be a good idea. A quick look suggests we have support/names from:

    Florida (Faye)
    New Jersey (Bob)
    Oregon (Me)
    Oklahoma (Betheny)
    Rhode Island (Curtis)
    Virginia (Scott)
    Maryland (Cheesecake)
    Texas (hope2findacure)
    New York (metronycguy)
    California (buckwheat)
    Minnesota (Susan M)

    As for signage, I dunno. I'm thinking of production costs and logistics. Since participants will enter buildings, it might be better if we had a banner or something that can be carried by two people and easily stowed. Maybe it could say something like, "UNITED, WE WILL STAND."
    Clipper,

    Asking members from each state to lend us their names is defintely an aggressive approach! You have a quick mind.

    Since you mentioned about banner etc., we should begin to think about searching for sponsors for our cause, big or small. I can contribute to a certain extent for sure, even though it might be minimal.

    One suggestion here: we may also consider to do a small fundraiser in our own home towns in order to support ourselves with the cost of participation and to kindly donate the residual amount to the cause!

    Suzanne
    Suzanne

    Comment


      #32
      Originally posted by Curt Leatherbee:

      Personally I feel we should make the focal point of this march around the passage of the Chris Reeve Paralysis Act. I think this way we are bound to get some really good press coverage and that same time really apply some pressure to get this act passed which should have happened years ago.
      Curt, you're absolutely right! Thanks!

      This will be one of our slogans. Or will it be our SOLE slogan?

      Suzanne
      Suzanne

      Comment


        #33
        Originally posted by Clipper:

        As for signage, I dunno. I'm thinking of production costs and logistics. Since participants will enter buildings, it might be better if we had a banner or something that can be carried by two people and easily stowed. Maybe it could say something like, "UNITED, WE WILL STAND."
        Clipper, the banner is a great idea! Maybe "UNITED WE WILL STAND" is too generic ( usually associated with a patriotic message ). Though in our case it can be taken literally and is so appropriate.
        I am also reminded of a message I saw printed on a t-shirt once: "HELP GET ME OUT OF THIS CHAIR", it is so very direct and really says what we are ALL there for. What do you think?

        ~ Scrutiny of an election with many unanswered questions does not damage public confidence in the democracy; absence of scrutiny does. ~

        Comment


          #34
          Betheny, kudos to you. Wise.

          Comment


            #35
            Passage of CR bill as Curt said.

            Also, when groups spread up, being we are not that experienced, I think it best we keep the message simple. Supporting CR bill would be great cause it was already thought out by experts. Might also mobilize CR foundation to join us. Maybe we shouldn't split up and disperse into small groups. Maybe we should march to committee member who has CR Bill. Small groups may not have a person that can handle every question well that may be thrown to group, could wind up detrimental. Only other message I might suggest is to stay away from research budget as a whole, except to ask for more funds to be directed to SCI research.

            Comment


              #36
              Formulate a good slogan that has something to do with while they sit on this BILL we sit in these chairs, invite them to try one out for a week.

              Somehow can we get the message out that not only adults have SCI. Children also do. Maybe the march could start from a Children's Hospital.

              [This message was edited by BigB on 01-23-05 at 12:19 PM.]

              Comment


                #37
                Since George Bush wan't to be known as the freedom and liberty president. Maybe a slogan something to do with this.

                I have thought of one or two so far. 1.) Freedom from Wheelchairs 2.) Reporting for Duty

                The second one may or may not be too good. Take a stand type action words come to mind.

                Also, words of reflection like Pause for Paralysis may not be bad. Let's Roll may get confused with us liking our wheel chairs instead of remembering the men omn the airplane that prevented the terrorists from hitting the White House.

                Would candles at night be ok and flags or crosses. What does a cross mean. Is it like be paralyzed.

                Could or should we ask Washington D.C. about them crucifying our people. Or why they are forsaking their own flesh and blood.

                ` Signatures for Spinal Cord Research

                Comment


                  #38
                  Possible T-Shirt Ideas:

                  1. Paralysis (with a red circle and slash)
                  2. Walk This Way
                  3. Persist In Hope
                  4. We Can. We Must. We Will.
                  5. Support = Cure

                  Good luck to all concerning this effort.

                  Comment


                    #39
                    Originally posted by Malibu:

                    Since George Bush wan't to be known as the freedom and liberty president. Maybe a slogan something to do with this.

                    I have thought of one or two so far. 1.) Freedom from Wheelchairs 2.) Reporting for Duty

                    The second one may or may not be too good. Take a stand type action words come to mind.
                    Good suggestions Malibu! How about FREEDOM FROM PARALYSIS on a banner?

                    ~ Scrutiny of an election with many unanswered questions does not damage public confidence in the democracy; absence of scrutiny does. ~

                    Comment


                      #40
                      Originally posted by Susan M:

                      Hi Beth,

                      My only request to all: Keep the partisanship off the table. This way, all will feel much more united to participate. The liberal and conservative views are too polarized and will divide us.

                      My vote for primary objective:

                      Full passage of the CRPA, with funding. Take those promising therapies collecting dust on researchers shelves and fast track them into clinical trials here in the USA. Emphasize the billions this country would save by solving this issue. Of course, also include facts on the human suffering aspect, as well.

                      Thanks,
                      Sue
                      Hi Sue,

                      Look, your 'vote for primary objective' is being accelerated and activated at the same time! Thanks so much for the input and we definitely look for more.

                      Suzanne
                      Suzanne

                      Comment


                        #41
                        With our USA budget issues as they are, I really think we need to emphasize the incredible cost savings to our economy a cure would bring. Give our legislatures a reason to divert funding to the CRPA.

                        Sue
                        Please submit your photo and story of hope:

                        http://bridges2hope.unite2fightparalysis.org/


                        http://unite2fightparalysis.org/

                        Comment


                          #42
                          Please feel free to use me as the name from Illinois (Chicago). I want very badly to go to Washington in April. Unfortunately, I was injured recently, and have subsequntly used all of my $$$ and time off from work. If there is anything I can do from here, just let me know.

                          Matthew J. Schaefer
                          T6 Incomplete 8/27/04

                          Originally posted by Suzanne Poon:

                          Originally posted by Clipper:
                          I don't think we need signatures, per se. As long as we have names, hometown and maybe injury level, date of injury, relation to injured person, etc. I think we can get at least one person from each state to lend us their name pretty easily. Posting in the chapters section or even going through Quest for a Cure would be a good idea. A quick look suggests we have support/names from:

                          Florida (Faye)
                          New Jersey (Bob)
                          Oregon (Me)
                          Oklahoma (Betheny)
                          Rhode Island (Curtis)
                          Virginia (Scott)
                          Maryland (Cheesecake)
                          Texas (hope2findacure)
                          New York (metronycguy)
                          California (buckwheat)
                          Minnesota (Susan M)

                          As for signage, I dunno. I'm thinking of production costs and logistics. Since participants will enter buildings, it might be better if we had a banner or something that can be carried by two people and easily stowed. Maybe it could say something like, "UNITED, WE WILL STAND."
                          Clipper,

                          Asking members from each state to lend us their names is defintely an aggressive approach! You have a quick mind.

                          Since you mentioned about banner etc., we should begin to think about searching for sponsors for our cause, big or small. I can contribute to a certain extent for sure, even though it might be minimal.

                          One suggestion here: we may also consider to do a small fundraiser in our own home towns in order to support ourselves with the cost of participation and to kindly donate the residual amount to the cause!

                          Suzanne
                          --------------------
                          "On November 2 the voice of the people was heard. I promise not to imitate it out of respect for the mentally retarded" - Lewis Black (Comedian)
                          --------------------
                          "On November 2 the voice of the people was heard. I promise not to imitate it out of respect for the mentally retarded" - Lewis Black (Comedian)

                          Comment


                            #43
                            Originally posted by Wise Young:

                            Susan, if you go to the main carecure web site (at Rutgers, http://sciwire.org) you will see a number of articles that I have posted. There is a lecture that I have given many times on there as well, entitled the "Basis for Hope in Spinal Cord Injury".

                            Over two dozen therapies have now been reported to regenerate the spinal cord and restore function in animal studies of the spinal cord. The laboratories are working as fast as they can within the limited resources that are available to them.

                            Because most companies (particularly large pharmaceutical companies) regard spinal cord injury as a "small market", they have been reluctant to invest in spinal cord injury research. Only in the past three years have some of the deep-pocketed companies begun investing. This includes Novartis (Nogo antibodies) and Biogen (Nogo receptor). On average, it costs a pharmaceutical company about $800 million and 11 years to move one therapy from discovery to market.

                            So, this is where the government must step in. The CRPA originally proposed to establish 6 paralysis centers that would be the backbone for a network of clinical and basic science centers to collaborate. It had asked for $300 million over 3 years to do this. It is now an unfunded mandate to NIH, asking them to establish collaborative centers and place a higher priority of treatments to reverse paralysis. These include not only therapies to regenerate the spinal cord but also rehabilitative therapies. The bill was held up in committee for several years.

                            At the present, care and support of people with spinal cord injury is costing the nation over $10 billion per year. The federal government through NIH is spending less than $100 million per year in research to reverse spinal cord injury. A significant fraction of these funds are being spent on epidemiological and rehabilitative studies. Perhaps about half of these funds are devoted to curative therapies.

                            My personal preference would be a bill that would allocate $300 million that fund a spinal cord injury clinical trial network in the United States and Canada. This network will substantially defray the costs of taking a therapy to clinical trial, reduce the setup costs of the trials, and increase the speed with which therapies can be taken to trial.

                            At the present, when a therapy needs to go to trial, years may be spent raising the money, doing the necessary preclinical work to establish safety and appropriate clinical trial design, and organizing the clinical trial centers that would execute the trial. By reducing the cost and time needed to move therapies to clinical trial, I believe that more companies will be willing to invest in spinal cord injury therapy development.

                            Wise.
                            A post from Dr. Young late last year. I thought this might be helpful.

                            Sue
                            Please submit your photo and story of hope:

                            http://bridges2hope.unite2fightparalysis.org/


                            http://unite2fightparalysis.org/

                            Comment


                              #44
                              Matthew, thanks for your support from Illinois!

                              Bethany, the map you posted sure makes the Holiday Inn- Hill look convenient. [img]/forum/images/smilies/cool.gif[/img]

                              Clipper, thanks for you list! That rate of $99, is that a group rate already? When I called they quoted much higher. If we can get the rooms for $99, I think we ought to make the reservations as quickly as possible given that the "Cherry Blossom Festival" parade will be held April 9th, and people will be arriving in Washington for that.

                              PS We still need more of the "for sure" and "likely" voters of the Poll titled Inventory for the Washington March, to e-mail, post or PT Betheny or myself their names, so we can update the list started in a post in the featured Activism thread at the top of the CURE forum. THNX

                              [This message was edited by Faye on 01-23-05 at 03:32 PM.]

                              Comment


                                #45
                                Originally posted by Susan M:

                                With our USA budget issues as they are, I really think we need to emphasize the incredible cost savings to our economy a cure would bring. Give our legislatures a reason to divert funding to the CRPA.

                                Sue
                                Sue, your word is heard and thanks for posting the additional info from Wise!

                                Beth & Faye,

                                I think we should soon start up a summary of the logistics/agenda under one single post if possible, and keep it revised on a daily basis. Obviously, it's very hard to wade through loads of post here in order to look for the specific required information.

                                We can post the summary either at the bottom of Beth's opening post of this thread or we will create a new thread on this. IMO, on one hand, we ought to look organized; on the other hand, our valuable members here should be well served and informed of all the most updated details of the March.

                                For example:-

                                1. Date of March
                                2. Time of March
                                3. Route of March
                                4. Slogans of March
                                5. Rundown of March
                                6. Hotel Accommodations
                                7. Signatures from Various States
                                8. Dress Code
                                9. Permit Application
                                10.etc., etc...

                                Suzanne
                                Suzanne

                                Comment

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