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    The Mission of CareCure

    In recent months, I have noticed that some people are posting ideas about how to use CareCure for this or that advocacy movement, even to collect funds. It might be useful for me to describe what the mission of CareCure is and what it is not.

    CareCure is an information web site. It is a place where people with spinal cord injury and related conditions can get together and discuss care, cure, and life and obtain the best and up-to-date information on these and related subjects. Over the years, we have added several other forums all aimed at facilitating communication and providing information to members.

    CareCure itself does not advocate particular points of view concerning care, cure, or life with spinal cord injury. Many members of course advocate their views on these and other subjects, such as politics, religion, food, music, literature, etc. These are views of the members, not CareCure.

    While advocacy movements have started within CareCure, the responsibility for these movements rests with the members and not CareCure itself. CareCure does not espouse any particular view on stem cells or other matters. I have discouraged attempts to collect money from carecure members in the same way we discourage advertising on this site.

    Let me explain why I decided that the mission of CareCure is information and not advocacy. Before I founded CareCure in July 2001, I had started Spinewire, the first interactive community forum. In 1999, I agreed to allow a company called Cando to take over Spinewire in hopes of generating revenues for spinal cord injury research.

    In 2001, Cando crashed along with the dot com industry. Cando took spinewire.com and cando.com into its grave. Even though I offered them $40,000 of my own money to purchase the spinewire/cando database from them, they sold the database and the remnants of Cando to some company for $200,000.

    When I formed CareCure, I decided not to allow CareCure be controlled by any organization again. From 2001-2006, we hosted CareCure on a commercial servers. It was expensive and we moved CareCure to Rutgers University. It continues to function with little or no interference from any organization. At the present, I am supporting the server with my donations. We have retained our independence.

    CareCure cannot itself be an advocacy site is because there is a tendency for advocates to attack and drive out people who don't agree with them. Advocates of all types are welcome here, except when they attack each other. That is why the first rule of the site is no attacks of other members. Unfortunately, many members break this rule all the time.

    It also is a human tendency to want to gather your friends around you and ban people that you don't like. We do not ban people because they hold unpopular views or are disliked. Over the years, we have banned relatively few people for egregiously attacking others and only after repeated warnings and refusal to comply.

    There is only one exception to this banning rule. Starting in 2007, spammers flooded our forum and many others. In order to survive, we ban spammers (i.e. people who post advertisements on our forums) on sight because they are not legitimate members of our community and are seeking to use our web site for commercial purposes.

    Thus, CareCure is an interactive information site for all people in the community, not only those who hold a particular point of view about care, cure, or life with spinal cord injury. We welcome all those who want to know about any aspect of spinal cord injury, who have information that they wish to share with others, and advocates of all view points.

    Wise.
    Last edited by Wise Young; 2 May 2010, 9:18 PM. Reason: I clarified the advocacy paragraph (changes in red)

    #2
    I am grateful for the information. With the exception of excellent rehab,I have learned more here in a few months than I did in a year.

    Comment


      #3
      Fair enough. Should be required reading for all members.
      - Richard

      Comment


        #4
        Thanks Wise. I do hope everyone reads this and some of the dissension comes to a halt.

        Comment


          #5
          Originally posted by Wise Young View Post
          At the present, I am supporting the server with my donations. We have retained our independence.
          Where can we go to donate, Wise?
          ____________________

          "We are the ones we've been waiting for. We are the change that we seek."
          - Barack Obama

          Comment


            #6
            Thanks doc, for all you do. Your drive, humbleness and donating your valuable time is a reminder for me to do the same. Thank you for being you. 37yrs. post injury.

            Comment


              #7
              Ditto what patrick said, appreciate the time doc, thanks.

              Comment


                #8
                Originally posted by Wise Young View Post
                In recent months, I have noticed that many people are posting ideas about how to use CareCure for this or that advocacy movement, even to collect funds. It might be useful for me to describe what the mission of CareCure is and what it is not.

                CareCure is an information web site. It is a place where people with spinal cord injury and related conditions can get together and discuss care, cure, and life and obtain the best and up-to-date information on these and related subjects. Over the years, we have added several other forums all aimed at facilitating communication and providing information to members.

                CareCure is not a site for advocating better care, cure, or life with spinal cord injury. Many members are of course advocates of particular views but they post information that advocate cure, care, or life endeavors. The site itself does not represent or espouse particular views concerning care, cure, or life with spinal cord injury.

                While advocacy movements have started within CareCure, the responsibility for these movements rests with the members and not CareCure itself. CareCure does not espouse any particular view on stem cells or other matters. I have discouraged attempts to collect money from carecure members in the same way we discourage advertising on this site.

                Let me explain why I decided that the mission of CareCure is information and not advocacy. Before I founded CareCure in July 2001, I had started Spinewire, the first interactive community forum. In 1999, I agreed to allow a company called Cando to take over Spinewire in hopes of generating revenues for spinal cord injury research.

                In 2001, Cando crashed along with the dot com industry. Cando took spinewire.com and cando.com into its grave. Even though I offered them $40,000 of my own money to purchase the spinewire/cando database from them, they sold the database and the remnants of Cando to some company for $200,000.

                When I formed CareCure, I decided not to allow CareCure be controlled by any organization again. From 2001-2006, we hosted CareCure on a commercial servers. It was expensive and we moved CareCure to Rutgers University. It continues to function with little or no interference from any organization. At the present, I am supporting the server with my donations. We have retained our independence.

                CareCure cannot itself be an advocacy site is because there is a tendency for advocates to attack and drive out people who don't agree with them. Advocates of all types are welcome here, except when they attack each other. That is why the first rule of the site is no attacks of other members. Unfortunately, many members break this rule all the time.

                It also is a human tendency to want to gather your friends around you and ban people that you don't like. We do not ban people because they hold unpopular views or are disliked. Over the years, we have banned relatively few people for egregiously attacking others and only after repeated warnings and refusal to comply.

                There is only one exception to this banning rule. Starting in 2007, spammers flooded our forum and many others. In order to survive, we ban spammers (i.e. people who post advertisements on our forums) on sight because they are not legitimate members of our community and are seeking to use our web site for commercial purposes.

                Thus, CareCure is an interactive information site for all people in the community, not only those who hold a particular point of view about care, cure, or life with spinal cord injury. We welcome all those who want to know about any aspect of spinal cord injury, who have information that they wish to share with others, and advocates of all view points.

                Wise.
                I appreciate everything you do and all of the value of CC, and if I violate the rules or their intent please let me know.
                2012 SCINetUSA Clinical Trial Support Squad Member
                Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

                Comment


                  #9
                  Seem like the more things change, the more they stay the same. I'll never understand why advocating for a common goal is the breeding ground for violent rifts, but I've seen it enough times to know it's true.

                  Thanks Wise, you are well-named.
                  Blog:
                  Does This Wheelchair Make My Ass Look Fat?

                  Comment


                    #10
                    Sounds pretty straight forward to me.

                    Thanks again Dr. Wise for all that you've done and continue to do for us.

                    Comment


                      #11
                      I think this site is great. It has allowed me to learn more about my injury. I am grateful for efforts Dr. Young.

                      Comment


                        #12
                        Thank you Dr Wise Young for your generosity in providing a resource that has been a life saver for many of us. I mean a life saver for me literally. Again, I thank you.

                        Amy
                        Anything worth doing, is worth doing to excess

                        Comment


                          #13
                          I still think something should be done to those that are verbally abusive to others.

                          Comment


                            #14
                            Originally posted by LindaT
                            I am grateful for the information. With the exception of excellent rehab,I have learned more here in a few months than I did in a year.
                            • Thanks. This is what all the moderators and I hope that the site would do for people. Knowledge is power and liberating.

                            Originally posted by rfbdorf
                            Fair enough. Should be required reading for all members.
                            - Richard
                            • When Cando went down in 2001 and it took over two weeks to start CareCure, many of us felt the acute loss of community. Where else could people go to ask their questions, to find out what was going on in research and with each other, to ask questions about their care that their doctors don't know the answer to, and to share their experiences. I didn't express it correctly in what I wrote but that was when the mission of CareCure became clear. Even now, CareCure is the only place where one can go for this information.

                            Originally posted by Eileen
                            Thanks Wise. I do hope everyone reads this and some of the dissension comes to a halt.
                            • Eileen, you are very welcome. I am not sure the dissension will stop. On the other hand, I hope the statement will help persuade members that all views are welcome and the site is not only for curemongers, conspiracy theorists, clinical trialists, caregivers, but for all who are or care about the spinal cord injured.

                            Originally posted by flicka
                            Where can we go to donate, Wise?
                            • If you click on the upper left corner where it says W. M. Keck for Collaborative Neuroscience, you can donate to "Special Project". Write down "carecure". The funds would go into an account that would support the expenses of the site. Thank you.

                            Originally posted by Patrick Madsen
                            Thanks doc, for all you do. Your drive, humbleness and donating your valuable time is a reminder for me to do the same. Thank you for being you. 37yrs. post injury.
                            • You are very welcome and thank you for all that you do. Please, I also want to say that this site would not be but for all the dedicated moderators who spend every day here reading all the posts and helping respond to the people here.

                            Originally posted by fishin'guy
                            Ditto what patrick said, appreciate the time doc, thanks.
                            • You are very welcome.

                            Originally posted by swh2007
                            I appreciate everything you do and all of the value of CC, and if I violate the rules or their intent please let me know.
                            • No, you have not violated any rules. You have been tremendously helpful and a great leader of discussions. We have only three rules on CareCure. The first and prime rule is no attacks on other members. The second rule is no spamming, including in the signature. The third rule is no posts that are deliberately provocative and roiling of other members, such as a fake suicide.

                            Originally posted by betheny
                            Seem like the more things change, the more they stay the same. I'll never understand why advocating for a common goal is the breeding ground for violent rifts, but I've seen it enough times to know it's true.

                            Thanks Wise, you are well-named.
                            • Well, betheny, I was thinking how far you have come since the first rally. Those were historic times and the first major political rally of the spinal cord injury community in Washington DC.

                            Originally posted by doingtimeonmyass
                            Sounds pretty straight forward to me.
                            Thanks again Dr. Wise for all that you've done and continue to do for us.
                            • You are very welcome.

                            Originally posted by stevegalliazzo
                            I think this site is great. It has allowed me to learn more about my injury. I am grateful for efforts Dr. Young.
                            • You are very welcome.

                            Originally posted by skippy13
                            Thank you Dr Wise Young for your generosity in providing a resource that has been a life saver for many of us. I mean a life saver for me literally. Again, I thank you. Amy
                            • Amy, I am so glad. It has been a pleasure and I am proud of the hard work that our SCI-Nurses do.

                            Originally posted by canuck
                            I still think something should be done to those that are verbally abusive to others.
                            • Something is being done.
                            Last edited by Wise Young; 3 May 2010, 12:52 PM. Reason: edited for clarity (in red)

                            Comment


                              #15
                              In an imperfect world, Care Cure gets very high marks for doing the job it was created to accomplish.

                              My thanks to you, Wise, the Moderators, the SCI nurses, and all the members of Care Cure who make it so valuable to people with an interest in SCI.

                              ETA - oh yeah, that Edwards boy probably does something useful to keep CC going when he's not being chased by the hotties proposing marriage (and less high-minded pairings).

                              I would suggest to those frustrated by the light-handed moderation, that the cure for what they object to would be worse than the disease. CC reflects the larger, raw world where both AB and SCI exist. People at their best and worst. Often, the same people displaying their different aspects. We deal with the whole package. This is a key element to CC's success.
                              Last edited by Foolish Old; 3 May 2010, 12:23 PM.
                              Foolish

                              "We have met the enemy and he is us."-POGO.

                              "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

                              "Dream big, you might never wake up!"- Snoop Dogg

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