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    Some musings

    I had the opportunity on Tuesday afternoon to spend some very precious time with Wise, and I'd like to share with you all some of his observations and feelings, as part of the discussion we had (Wise, I hope you don't mind).

    Wise had (still has!) great hopes for this very special Care/Cure community, revolving around establishing a strong, grounded grass-roots organization to present a voice to the public, to legislators, to researchers, and - most importantly! - to the financiers without whom any research would be impossible.

    He also hoped to establish a freely run forum where members were encouraged to participate in 'lively discussion' of both care and cure issues, to learn and grow, and become more solidified as a group.

    In many ways, we, as the membership, have accomplished this. We have dedicated members who post alerts almost immediately when an important piece of Cure - or Care - news comes up. We have all learned enough neuroscience to talk intelligently with most researchers about the myriad of theories, ongoing research, and the pros and cons of each. We have rallied at times to give legislative support to those in government who support Cure bills.

    In other ways, however, we've let ourselves get caught up in petty 'board politics', and have allowed ourselves to perhaps lose the focus of what we all want - a Cure. It doesn't matter that some of us believe that OEG will be the way, others believe adult stem cells are the answer, while others firmly believe that only fetal stem cells will be the answer. The only thing that matters IS finding a Cure, and the way we can do this best is by focusing on whatever it is we can do to help those wonderful scientists meet this goal; by lending our vocal and written support to ears that are ready to listen - even to those who aren't ready to listen; to become singleminded in our determination to get everyone here out of those chairs, so that we can all get on with our lives.

    We've become so divided in our loyalties - are we Care or Cure? - are we OEG or SCNT? IT DOESN'T MATTER! The only thing that DOES matter is that everyone here is either in a wheelchair, or a family member of someone in a wheelchair, because of spinal cord injury, and the focus has to be on doing whatever we can do to help.

    The government is willing to throw tons of money toward bioterrorism research; as Wise pointed out to me, developing an Anthrax vaccine is useless, as one would have to be developed for each strain of Anthrax; however, a simple antibiotic could take care of any Anthrax 'invasion'. The government is going to throw tons of money toward Africa to develop a vaccine for AIDS. While I do agree that AIDS is a plague that needs to be stopped, it has become a 'PC' issue to support research toward developing a 'cure' for AIDS. We, as the spinal cord community, need to make it OUR goal to make a cure for spinal cord injury as 'PC' as a cure for AIDS. It's up to us. We can't sit around whining about what has or has not been done. We have to make ourselves heard, and not sit back and wait for the magic wand to be waved.

    I hope Wise doesn't mind my sharing with you, the community, some of the things that were on his mind this afternoon. I would like to make a plea to our members to set aside our differences, and begin to work together, and realize the power that our community right here at CareCure has, to make our voices heard loud and clear. For those of you who say, well there are some who don't want a cure - fine! They're not a part of the community here; no one is forcing them to change the way they think. WE need to keep focused on OUR goals - which is to let the world know that wheelchairs can become obsolete if only our researchers are allowed to work their magic without fear of losing their funding.

    Thanks for listening, everyone. I wish you all the peace your hearts can give.

    Jackie

    _____________
    Tough times don't last - tough people do.
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    #2
    Excellent points Marmalady! This should become our mantra, a set of objectives to reference when we begin to lose sight of the goal and forget why CC exists. Thank you for sharing this with us.

    [This message was edited by seneca on 02-15-03 at 01:08.]

    Comment


      #3
      Nice post jackie,

      I try myself to stay on my Congressman. I agree as well we all need to ban together and shout real loud to be heard and get funding to help our cause. Count me in!

      Chris

      Comment


        #4
        Thank you Jackie. Well put.


        I think its very important to remember that shortest distance between two points is a straight line. That straight line to an sci cure is simply a coordination of effort buoyed by consistent and adequate funding supported and driven by the SCI COMMUNITY!

        In general, regardless of the issue, if you're not part of the solution then you are part of the problem because you expect others to pull your weight. That's wrong. Get involved, be a part of the solution.

        Comment


          #5
          Bump.

          _____________
          Tough times don't last - tough people do.
          _____________

          Comment


            #6
            Great post, MarmaLady. I agree.

            We need such a united voice, we've needed it for a long time. It's attaining it that seems to be the problem. It seems to me those sci who don't have Cure as one of their goals sometimes seem to get more of the media attention. I don't know if this is just me, or if it's a fact, but it sure seems there are strong voices against putting money into cure research, as opposed to care research.

            I hope we can band together, and just all try to raise more dollars for a cure, and also continue with care funding. Everybody with sci benefits from a cure, whether it's a priority for them or not, and for society as a whole, it's economically beneficial to cure us.

            Wise keeps the hope alive with this website. I also would like to see medical professionals come here and air their thoughts, what they're doing currently research-wise, and also hear how they feel about the viability of a cure, at least partially, happening soon.

            I would also like to see those who would back them with funding come to this website, being as it's the only place where the latest and greatest can be found on cure therapies.


            -Bob
            Please donate a dollar a day at http://justadollarplease.org.
            Copy and paste this message to the bottom of your signature.

            Thanks!

            Comment


              #7
              You know, it seems to me that if we're going to succed at this, we need to be as Frodo, the Ring Bearer was. We have to be of one mind, and not be swayed by orcs, or gollums, or evil forces.

              If we're singleminded and focused then it won't matter that others speak out, either anti-cure, or anti-ESC, or anti-whatever. We stick to our purpose, stay on track and get it done. Simple.

              I, too, would love to see more researchers posting. But if I were a researcher who saw some the verbal attacks made here, I think I would have second thoughts about commiting myself to posting my viewpoints and theories.



              _____________
              Tough times don't last - tough people do.
              _____________

              Comment


                #8
                rdf, if we look at recent news articles, ones that proclaim that a cure is near far outnumber those that deride the possibility of a cure. Even the most radical care mongers admit that cure is possible but hold that a cure is too far away to benefit them and argue that there is a need for better access, employment, and care.

                What is worrisome to me is the luke-warm community support for increasing U.S. research funding for spinal cord, even on this site. For example, whenever I have posted even dire warnings about legislation or NIH budget, only a few dozen people would take a look. Why is this? Is it because people don't think that NIH funding of spinal cord injury research is relevant? Is it because people think that there is nothing they can do?

                Wise.

                Comment


                  #9
                  Originally posted by Wise Young:

                  For example, whenever I have posted even dire warnings about legislation or NIH budget, only a few dozen people would take a look. Why is this? Is it because people don't think that NIH funding of spinal cord injury research is relevant? Is it because people think that there is nothing they can do?

                  Wise.
                  Dr. Young, I think it's the latter. The political process can be intimidating. Many people feel helpless when it comes to influencing their representatives to pass legislation on behalf of a cause few are familiar with. If form letters and e-mails are indeed the way to go then perhaps they need to see evidence that a small grass roots movement can effect immediate change now, not in 5 or 10 years. The process needs to be demystified. Also, not everyone supports ESC research for a myriad of reasons so I'm not suprised that legislation in support of that doesn't get much attention from the SCI community. The majority of those who support a cure also support increasing NIH funding for SCI research in general and the clinical trials network you suggested in another post but some may need more precise directions on how to go about doing that.

                  Comment


                    #10
                    Sounds good to me! What can I do to help?

                    I am a relatively independent quad (thanks to my wife) living in upstate New York, 16 months post injury. Luckily, my business survived my hospital stay and now I am able to go to work three days a week to help manage and also spend time with customers. I also spend a lot of time in various types of therapy, mostly managed by myself. And, I'm on the computer a lot - checking e-mail, reading forums, and working on my own web site: www.briansternberg.com.

                    I've been trying to help newly injured people in my area and ones that I have come in contact with through my web site by offering words of advice and encouragement. But, if there's more that I can do to educate the general public and/or generate interest in research funding, I would be glad to get involved.

                    I think that one of the problems with getting injured people involved is the nature of SCI. Daily maintenance, therapy, and routine can take up most of the day. Add in pain, depression, UTIs, and whatever, and many people have precious little energy to do anything else. This is why we need to work toward a cure. Thank you Dr. Wise Young, and everyone else involved in this web site. You're doing a great job!

                    Comment


                      #11
                      Hi Brian,

                      Checked out and read some of your story, sorry your here with us but stuff happens. eh Suggest you add links to this site and the OEG Petition site on your home page.

                      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


                        #12
                        Hi, Brian, and Thanks for the support. One of the things you could do is get a networking 'chain' going for upcoming legislation. Don't know if you've checked out our Legislative forum, but whenever legislation is coming up, we try to post links to the politicians involved, to show our support.

                        _____________
                        Tough times don't last - tough people do.
                        _____________

                        Comment


                          #13
                          What is worrisome to me is the luke-warm community support for increasing U.S. research funding for spinal cord, even on this site. For example, whenever I have posted even dire warnings about legislation or NIH budget, only a few dozen people would take a look. Why is this? Is it because people don't think that NIH funding of spinal cord injury research is relevant? Is it because people think that there is nothing they can do?
                          Apathy. Fear. Afraid to try and make a difference. Figures someone else will do it for them. It's too "hard". I've heard every excuse in the book. And I have tried to get people to go to events in DC when all they need do is show up. No speech to make or press to talk to but just show up, make a presence known and see how stuff works. Next time then maybe they will want to do more. But get them there? If I have to depend on most the people here for a cure I might start swimming now for Australia.

                          It's not like we don't have back ups to those who are slated to speak. All anyone here has to do is write Patricia, Marmalady, Wise or me and we'll get your information to the people who will guide you through the process. Senators and congressmen are our servants; no one should have stage fright speaking to them.

                          Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."
                          Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                          Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                          Comment


                            #14
                            Sue,

                            When I was in college, I studied Skinner (yes most of psychology courses in the 1960's were dominated by Skinner) who said that the best way to extinguish behavior is to ignore it and provide no positive reinforcement. This may be what has happened to our community regarding political action.

                            Apathy is of course not unique to our community. In fact, over half of Americans don't even vote. Voter apathy does not mean that people do not care. It simply means that they have been behaviorally trained not to vote. If people received no reinforcements for their votes, i.e. it is not clear at all that their votes make a difference, they stop voting. The same is likely to be true for people's attitudes towards lobbying for spinal cord injury funding.

                            Some of the people here, however, will remember how the community played a major role in convincing the state of New York to put $15 per speeding ticket to fund spinal cord injury research. Over a 6 month period, we (and I say this "we" proudly) convinced the legislature in Albany to pass unanimously a bill that is now funding over $8 million of spinal cord injury research in New York. After the bill passed, I posted a message to the group, thanking people for "darkening the skies of Albany with email missives" whenever there was any opposition to the bill. This experience kicked off the Quest for Cure which is, in my opinion, the most succcessful fundraising campaign for spinal cord injury research to date, bringing in over $22 million per year for spinal cord injury research, and the main reason why spinal cord injury research will be able to survive the current drought in funding.

                            Success breeds success. Perhaps what the community needs is a successful experience in getting a bill passed in Congress. For the longest time, the disability community was apathetic and unable to act until they got the ADA passed. This experience made the disability community a force to be reckoned with and raised a generation of disabled political activists.

                            Like you, I have experienced the emptiness when a rally is called and nobody shows up. Perhaps this is because rallies and marches on Washington is not the right mechanism for us. I believe that internet is the best mechanism for the spinal cord injury community to exert its neurons.

                            The following is a joke of course but does provoke some thought. About a third of our brain is devoted to controlling and sensing our body. Many people with spinal cord injury have several billion idle neurons. Why not put them to work?

                            Wise.

                            Comment


                              #15
                              I don't think that there is a lack of enthusiasm with anyone here. And it is hard to believe that all those ABs I talk to and who try to empathize with me, would not do something to help others and those like us. America is starving for something to rally behind. I believe the problem is that most of us do not know what to do. I think that most of us would be willing to do the work to make every state enact similar legislation to the New York, speeding ticket, addition, if we knew where to start and what to do. We need specifics. We have tried to start grass-roots movements before, but it hardly goes past the initial phase because. We are constantly re-inventing the wheel. We need the direction of those who have done it before. Once you have a system that works, we need to implement it over and over again. How much money could we generate if every state had an additional charge for every ticket given?
                              "No mother on either side could say that whatever was won was worth my son"--Steve Mason

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