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    #31
    And a big ol' yeehaw to mattblan too!

    Registration count today:
    31 wheelchairs
    37 walkers

    Yayyyyyy!

    "You need to march. You need to demand action. You need to stop feeling unempowered and do something...Freedom is your right. Until you claim your self-confidence and know your worth, no one will give it to you. It starts with you."-LetsGo
    Blog:
    Does This Wheelchair Make My Ass Look Fat?

    Comment


      #32
      I printed out the text and a small logo from the cureparalysisnow website. I am planning on sending that and info about the support group I am starting to the area neurologists and therapy places. Maybe it will drum up some interest.

      jOE
      jOE
      www.nwiscig.blogspot.com

      Comment


        #33
        Originally posted by jplw:

        I printed out the text and a small logo from the cureparalysisnow website. I am planning on sending that and info about the support group I am starting to the area neurologists and therapy places. Maybe it will drum up some interest.

        jOE
        Joe, you're one of a kind!

        Let's hold our hands tight and work towards this end hand in hand, heart to heart!!

        Suzanne
        Suzanne

        Comment


          #34
          Everyone please write those letters to your state legislators. If I can do it than you can too. [img]/forum/images/smilies/wink.gif[/img]

          Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash
          Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

          Comment


            #35
            Originally posted by november:

            Everyone please write those letters to your state legislators. If I can do it than you can too. [img]/forum/images/smilies/wink.gif[/img]
            Hi November, you're great! Your beauty is well known but I have also witnessed you grown into a mature and independent young lady!

            Suzanne
            Suzanne

            Comment


              #36
              You guys jumped right on the assignments I sent out, making appointments with your legislators. I was way impressed. Thanks for not telling me I'm not the boss of you. [img]/forum/images/smilies/tongue.gif[/img] Seriously,though, y'all rock.

              Today Faye and I talked to Tricia Brooks from the Christopher Reeve Paralysis Foundation, she is very likable. She said she has always wanted to have a wheeler's rally so she is excited and full of ideas. We really are the 1st gang of chairs to descend on Washington, apparently. She said 20 chairs would make an impact. We're wll over 30 already. CRPF says we can use their folders and add our CPN sticker to them for lobbying and media packs. That's a savings of 300.00 or more.

              Tricia has ideas for the CureParalysisNow.org website like adding the "making legislative appts" tips, but as I told her, I believe the appts. will be done by next Wed. so I'm not sure it's worth Jim's effort. Although it is a nice service that could be left up forever. She also suggested lobbying tips. Both good ideas imo.Jimnm's call, he has to do the work.

              As for the Robin Williams letter I wrote, Tricia gave the letter to his wife Marcia. So who knows. She probably thinks I'm a freak lol. Oh well, it got us motivated. Still no definitive word on whether or not Dana R. can attend. I guess we just keep hoping.

              Tricia has suggested that CRPF hold a reception for us Monday afternoon, 3-ish. Just to go over some lobbying stuff, finalize plans for the next day and MINGLE!!!! This is a good idea and very generous of them I think. They may also get us a room on Capitol Hill to relax in during our noon-2:00 break on Tues. We could rest, mingle, and make sure we have all we need for the afternoon's foray into politics. This stuff isn't finalized yet, btw. Plenty of time. There's even a possibility of a biotech company buying us lunch! Woohoo, no dragging sandwiches around! We can't do what we usually do,like when we have SCI org events we get disability-stuff vendors to foot the bill. There is NO SALES allowed on the Capitol lawn. Not even T-shirts.

              I'm sorry to say they are introducing the CRPA without funding. I'm really disappointed by that. This is where we, as CPN, come in. We're asking for funding. We need clinical trials darnit.

              Tricia had 1 issue. Somebody (?) had said to her that they heard we planned to throw catheters at legislators or something. [img]/forum/images/smilies/eek.gif[/img] I remember that discussion, it was sort of an angry joke I believe. It's a good time to mention, though, Sue Pendleton says any crime committed on Capitol Hill is a federal offense. Leave your spasm pot in your room, por favor. And maybe we should reach an agreement not to throw any urinary devices LOL. If you do I'm acting like I don't know you.

              Well, this got long. 1 last thing.

              We had a really amazing offer come our way via Ray Richardson, Justin's bro. There's a T12 para named Jim Passe, he's a very accomplished magician/illusionist. I'm not talking tacky here. He also does motivational speaking and is cure oriented. He's volunteered to speak or speak and do a show. If we only had a venue...my room at the Wash. Plaza probably won't cut it. I'll post links to his websites, boy is it a shame to turn this one down!

              www.magicofjimpasse.com
              www.jimpassefoundation.com
              http://www.blindfoldeddrive.com/

              What are y'all thinking out there? I've been working so hard I had to turn off IM. Talk to me Carecure LOL. [img]/forum/images/smilies/biggrin.gif[/img]

              "You need to march. You need to demand action. You need to stop feeling unempowered and do something...Freedom is your right. Until you claim your self-confidence and know your worth, no one will give it to you. It starts with you."-LetsGo
              Blog:
              Does This Wheelchair Make My Ass Look Fat?

              Comment


                #37
                Originally posted by Betheny:


                1. CRPF says we can use their folders and add our CPN sticker to them for lobbying and media packs. That's a savings of 300.00 or more.

                2. As for the Robin Williams letter I wrote, Tricia gave the letter to his wife Marcia. So who knows. She probably thinks I'm a freak lol. Oh well, it got us motivated. Still no definitive word on whether or not Dana R. can attend. I guess we just keep hoping.

                3. Tricia has suggested that CRPF hold a reception for us Monday afternoon, 3-ish. Just to go over some lobbying stuff, finalize plans for the next day and MINGLE!!!! This is a good idea and very generous of them I think. They may also get us a room on Capitol Hill to relax in during our noon-2:00 break on Tues. We could rest, mingle, and make sure we have all we need for the afternoon's foray into politics. This stuff isn't finalized yet, btw. Plenty of time.

                4. There's even a possibility of a biotech company buying us lunch! Woohoo, no dragging sandwiches around! We can't do what we usually do,like when we have SCI org events we get disability-stuff vendors to foot the bill. There is NO SALES allowed on the Capitol lawn. Not even T-shirts.

                5. I'm sorry to say they are introducing the CRPA without funding. I'm really disappointed by that. This is where we, as CPN, come in. We're asking for funding. We need clinical trials darnit.

                6. Well, this got long. 1 last thing.

                We had a really amazing offer come our way via Ray Richardson, Justin's bro. There's a T12 para named Jim Passe, he's a very accomplished magician/illusionist. I'm not talking tacky here. He also does motivational speaking and is cure oriented. He's volunteered to speak or speak and do a show. If we only had a venue...my room at the Wash. Plaza probably won't cut it. I'll post links to his websites, boy is it a shame to turn this one down!
                Beth, wow ~ so many good news! You rock...

                FIRST GANG OF CHAIRS TO DESCEND ON WASHINGTON

                1. $300 saved. I feel less stressful now in my solicitation efforts!

                2. Since they have not turned us down completely, this leaves us plenty of room for negotiation!

                3. CRPF and Tricia are truly helpful and generous!

                4. A biotech company buys me lunch! I like it...when was the last time someone bought me lunch... [img]/forum/images/smilies/tongue.gif[/img]

                5. No money no talk!

                6. A magic show by Tim Passe before or after Rally party, terrific!

                What more can we ask for??? We are a team finally!!! Way to succeed...

                Suzanne

                [This message was edited by Suzanne Poon on 02-19-05 at 03:19 AM.]
                Suzanne

                Comment


                  #38
                  Originally posted by Betheny:



                  3. They may also get us _a room on Capitol Hill to relax in during our noon-2:00 break on Tues. _ We could rest, mingle, and make sure we have all we need for the afternoon's foray into politics. This stuff isn't finalized yet, btw. Plenty of time.

                  This is compliments of Rep. Jim Langevin [img]/forum/images/smilies/cool.gif[/img]

                  Thanks Betheny for your spirited update!!!

                  Suzanne, I love the way you listed each item separately so we do not lose track of all these exciting developments!!!! [img]/forum/images/smilies/smile.gif[/img]

                  ~ People acting together as a group can accomplish things which no individual acting alone could ever hope to bring about. - Franklin D. Roosevelt ~ www.CureParalysisNow.org

                  Comment


                    #39
                    'any crime committed on Capitol Hill is a federal offense'
                    awww now i got an itch! are you SURE i can't bring my riot gear? even a LITTLE body armor? [img]/forum/images/smilies/frown.gif[/img] i promise i wont throw caths! we could at least shackle ourselves to our chairs for symbolism. don't worry, i'll go with the flow n play good lil cripple boy but it won't be as fun.

                    =It's the people that care for you that hurt you the most=
                    Death and taxes

                    Comment


                      #40
                      Originally posted by Cspine:


                      =It's the people that care for you that hurt you the most=
                      No, Cspine, this is not true! I promise I will not hurt you!!!

                      Faye, thanks! And we all like and share your spirits.

                      Suzanne
                      Suzanne

                      Comment


                        #41
                        IMO, it's important for us to go after the $300 mil for a clinical trial network like a pack of hungry wolves!!

                        Sue

                        "Either you decide to stay in the shallow end of the pool or you go out in the ocean." C. Reeve
                        Please submit your photo and story of hope:

                        http://bridges2hope.unite2fightparalysis.org/


                        http://unite2fightparalysis.org/

                        Comment


                          #42
                          You're right, Sue. We go after it like a pack of hungry wolves.

                          They're going to want us to think there is no more pie. But there's lots of pie. We need a piece of it. $300 mill isn't even a big piece.

                          "You need to march. You need to demand action. You need to stop feeling unempowered and do something...Freedom is your right. Until you claim your self-confidence and know your worth, no one will give it to you. It starts with you."-LetsGo
                          Blog:
                          Does This Wheelchair Make My Ass Look Fat?

                          Comment


                            #43
                            Originally posted by toots kazoo:

                            Kiran,

                            I got a flight from Portland OR for 233 RT on Delta. Check with some others to see if anyone wants to share a room.
                            Kiran need a room?
                            I have room to share in my hotel room, if you don't mind a Golden Retreiver. [img]/forum/images/smilies/smile.gif[/img] 233RT is a good deal, congrats.



                            Comment


                              #44
                              Cspine-

                              It's hard but you'll do a great job of impersonating a normal person. [img]/forum/images/smilies/biggrin.gif[/img]

                              You need to register dude!

                              "You need to march. You need to demand action. You need to stop feeling unempowered and do something...Freedom is your right. Until you claim your self-confidence and know your worth, no one will give it to you. It starts with you."-LetsGo
                              Blog:
                              Does This Wheelchair Make My Ass Look Fat?

                              Comment


                                #45
                                April 12 has significant meaning in curing paralysis.

                                By April 12, 1955, 10 years to the day after Roosevelt's death, Salk announced to the world that the vaccine worked: "It is safe, effective and potent." Efforts to vaccinate the nation's children went forward immediately, in somewhat helter-skelter fashion, to beat the summer onset of the disease. Source
                                50 years later to the day we are Marching on Washington

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