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Who and what is the CareCure Community?

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    Who and what is the CareCure Community?

    There seems to be a lot of posts about our site. So, I thought I would move the Feedback Forum back to the Community Forums. For a long time, it was languishing out in the Exchange Forums, unnoticed.

    Before putting forth any of my own opinions, I would love to hear what people think.


    Let me kick off the discussion by giving a little history and description of the forums. This site started as and then as It was intended and designed to be an informational site. At that time, there was no "spinal cord injury" community and there was no place on internet that provided an up-to-date and reliable source of information on care, cure, and life with spinal cord injury. The forums were organized along informational categories rather than communities.

    Most people were and are still attracted to CareCure initially because they were seeking information. Many stayed because they were beginning to meet others with similar problems. Initially, a core group of members moved from spinewire and cando with a strong interest in cure. Many got to know each other and a community of sorts formed there. However, most people went to the Life forum to socialize. At the suggestion of various moderators and members, we added the Relationship and Sex forum. People began to post questions and descriptions of relationships. Then we started the caregiving forum which became a haven for caregivers. The Pain forum attracted a small group of those who had pain. Most recently, we started the Family forum. In each forum, a few dozen people posted every day and they dominated the forums. We also established forums for Computers, Exercise, Funding & Legislation, Sports & Travel, Food, Politics, and New SCI.

    I think that the forums fall into four general categories:

    Informational Forums: These are forums where most of the topics provide information and the people come to find out what is going on.
    <LI> Announcements
    <LI> Care
    <LI> Cure
    <LI> Computers
    <LI> Exercise
    <LI> Funding & Legislation
    <LI> News Forums: Ability & Disability, General, Health & Science, Spinal Cord Injury
    <LI> Research Forums: Brain Injury & Stroke, Neurodegeneration, Multiple Sclerosis, Neuropathic Pain, SCI (Animal, Clinical, Related), Stem Cells, Traverse Myelitis.
    <LI> Exchange Forums: Books, Clinical Trials, Doctors & Clinics, Equipment & Services, Personals, Support Groups, Web Links.[/list]

    Community Forums. These are the forums where people gather to socialize and exchange experiences. We have five community forums, including an off-site forum for women
    <LI> Caregiving - This has become a haven for caregivers.
    <LI> Family - This started just a month ago and hopefully will provide a place of family members.
    <LI> Life - This is where many people hang out and share their lives with each other.
    <LI> Pain - This has become a place for people to share feelings, problems, and solutions.[/list]

    Discussion Forums. These are forums where people discuss certain subjects.<UL TYPE=SQUARE>
    <LI> Food - amazing how much people love to talk about food.
    <LI> Relationships & Sexuality - although this started out as an informational forum, it has rapidly become a discussion forum and less of an informational one. We are discussing the possibility of renaming it Relationships and creating a separate informational forum called Sexuality and Fertility.
    <LI> Politics - we created this because political discussions were taking over the Life Forum and it has taken on a life of its own.
    <LI> Sports & Travel - this is sort of a mix of both discussion (of sports) but also information (concerning how to do sports and travel).[/list]

    Member Forums. These are more private forums that are out of the limelight.
    <LI> Private Topics. Here members can invite other members to discuss topics without the rest of the membership seeing or participating.
    <LI> Members Only. Here the members can talk about anything they want.
    <LI> Member Pictures. This is one of the more popular forums because it allows people to share pictures.
    <LI> Moderators
    <LI> Quest for Cure
    <LI> and others.[/list]

    The "mission" of the site was and continues to be informational. As stated in the top of the front page, "Our forums provide the latest information on spinal cord injury and related conditions." While the site provides support for community and discussion groups, we must not forget that people come to CareCure for information. On the other hand, I believe that a true and vibrant community has formed. I wonder if others feel that this is the case?

    Are we a single community, a collection of communities, or just a bunch of people united by spinal cord injury? There are times when people behave like a community. For example, if a member is in trouble, other members join in support. There are certain issues that a majority of people resonate with (for instance food and care) but several issues are often divisive (politics, religion, sex, cure).

    What can and should we do to build community? Some community building measures are already in place, i.e. chat, member pictures, private topics. Many members are making arrangements to meet each other and there have been suggestions for an annual carecure symposium or get-together. There was even talk about having a carecure cruise, etc. Of course, we will be having a rally for the cure on June 6 in New York City where we hope that many members of carecure community can attend.


    [This message was edited by Wise Young on 02-11-04 at 09:11 PM.]


      I was thinking that maybe a format change for the site could help. You did a great job of dissecting the site forums. What about doing a physical link to each 'type' of community. Namely, an Informational Community related to SCI issues; and a Social Community for general socialization for members who enjoy lively interaction on a variety of topics SCI related or NOT. To illustrate: right now you have a link titled SCI community forums and then, list all the forums in one group.
      Maybe, there could be two links. One link to SCI information fourms, Another link to Social collaborative fourms. Then, have each forum you identified under the 'corresponding' link. Informational forums could be held to a higher standard for content. (Info ONLY) Of course, this would cause the moderators of those forums have to work harder and they ARE volunteers. However, the social forums could be identified as having possible 'objectionable' material not necessairily related to SCI, and an 'enter at your own risk' disclaimer. ALONG WITH THE EXPRESS UNDERSTANDING THAT THE CONTENT WOULD ALWAYS BE SUBJECT TO APPROVAL WITHIN THE REASON OF YOU AND THE MODERATORS. Still, it would allow You and the Moderators to 'shield' members who may have thinner skin. You are ALWAYS going to have problems with R&S, and how to classify it. I personally feel it should be informational SCI related because it is definately an issue and a REALITY, and sex is just loaded with 'hot topics'. Looks like the membership is a good representation of the 'real world' with everything from prudes to perverts! [img]/forum/images/smilies/smile.gif[/img] I think the member community should aknowledge that the R&S forum is just by nature controversial. I don't know the limitations of the site but, maybe R&S could be a forum that members would have to expressly 'subscribe' to.
      Just thoughts....

      We are all faced with a series of great opportunities... Brilliantly disguised as impossible situations.
      Arlington Cemetery is full of soldiers—the presidents buried there are few and far between. -Rusty VanReeves


        A good, juicy topic. [img]/forum/images/smilies/biggrin.gif[/img]

        I'll begin with a basic premise that is a little different than Wise's. I believe that there has always been a spinal cord injury community, but no place for that community to develop. Of course, there's a lot of definitions for community; I happen to agree with the ones provided by WebbyAwards and Ted Hanes:

        Webby Awards
        Sites creating and facilitating online community, connectedness and/or communication around shared interests. These sites can target either a broad-based or niche audience.

        Ted Haynes
        In the context of the Internet and electronic commerce, people who participate in a online discussion group or bulletin board, or who return frequently to a Web site because of a common interest in a given subject. One business strategy developing on the Internet is to create a community and then sell access to the group for marketing purposes. (See bulletin board system in the hard copy dictionary.)
        There are a lot more, but those are in general. Searching for online community gives two definitions, both of which fit this site [which is what I have always thought, given the "CareCure Community" logo and links at the top of each page [img]/forum/images/smilies/smile.gif[/img]].

        The common uniter for this community as a whole is spinal cord injury or, more generally, paralysis. Of course, as a community grows, subcommunities can and will develop; there are several in our community: those here for information, those primarily interested in cure research, those primarily interested in advocacy, parents, significant others, and many more. [img]/forum/images/smilies/smile.gif[/img]

        Another feature of a growing community is in-fighting. The fact that people will argue over things that happen on this site that irritate them shows that they have a vested, possibly emotional interest in seeing the site do well and improve. If this was just another site -- and not a community -- people would just click away to another site.

        What can and should we do to build community? Listen to the community. Provide tools so that each member has the oppurtunity to express themself and allow others to get to know them, if they so choose.

        Those are my thoughts, anyway. [img]/forum/images/smilies/smile.gif[/img]

        -Steven's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.



          Let me respond to some of your many good suggestions.

          1. Subscription to the R/S forum. The moderators have been discussing various options to the R/S forum. One is that only people 18 or older would be allowed to see and post in the forum. This alleviates the worry of minors. On the other hand, it is a little worrisome that this may then lead to people thinking that they can post anything they want on that forum and therefore a lot of work for the moderators. A second option is similar to the one that you describe. We can ask people to apply to be a member of the forum and each application would be approved individually. The question is what criteria should be used. A problem is the work that this entails because it requires somebody to manually approve each application or subscription. A third option is to make it a Relationships forum and urge people to be circumspect. Although this is not stated, I think that most people understand that posting of non-SCI related pornographic material is not appropriate for our site.

          3. The design of the links for groups of forums is difficult. Out of sight, out of mind. We discovered that very early on that if we segregated the community and informational forums, traffic on both of the forums fell. That is because people come to the site for both information and community. For example, we actually moved the R/S forum in the Members category about a year ago. The forum nearly died there for the lack of traffic. The software on this site allows us to show all the categories or just one category of forums on one page. So, what we did was to show all the categories in the front page ( or and allow links that went to each category of forums. As you can see, the Community forums which include some of the most important informational and community forums have gotten by far the lion's share of all the posts and views. Just one link makes a difference in the success or failure of a forum. A forum must achieve a critical mass of several hundred people coming in daily or else it languishes.

          4. This site is growing rapidly. In the past three months, the traffic has nearly trebled, from about 25000 page views per day to 65000-80000 page views per day. The number of registrations has doubled from 4-5 per day to 8-10 per day. This is despite the fact that we have spent very little effort or time advertising this site. This means that there may be as many as 50 or more "newbies" (people who have visited the site just once or twice) joining the site every day. Such people are often not use to the community and may not understand the organization of the site. Expectations of this site vary tremendously. A lot of times, people come and they can't find what they are looking for. I would very much like to put a web page up that explains how this forum is organized, some of the ground rules of behavior and posting, and how to find information. But, before doing so, I would like to get as much feedback as possible.

          Thanks very much.



            Dear Wise,

            I have always felt that the primary 'mission' of CareCure was to provide information and share resources. I think that in the sharing of that information the community started to develop, as only by 'sharing' our experiences could we also share the information we have all gleaned in our somewhat crash courses in spinal cord medicine and cure research! Thus a community of sorts did develop, as we all got to know each other.

            To build a community, on the Internet or in a physical neighborhood, the cooperation of all involved is needed; compromises need to be made, and a general agreement has to made that one's actions reflect the desire to make the whole community better as a unit. When groups split into 'factions', or when one member's personal ego is allowed to overrun the group as a whole, then devisiveness has begun. Each community member must feel a sense of responsibility and pride in their contributions, and ask themselves if their words or behaviors are furthering the purpose of the forums.

            I am glad to see these types of discussions going on; growth is good, although painful at times; change is good, because it means that we are all growing, in knowledge and tolerance.

            On a practical note, I had suggested some time ago that a 'New Members Page' be started, to explain the forum rules, and the mechanics of maneuvering through the site. If a new members posts in an inappropriate forum, they can be directed by the moderator of that forum to go to the 'new members' page, sign in there, say hello and introduce themselves, and also get a synopsis of the functions of the site.

            I love this site; my wish for it is that only continues to grow by leaps and bounds, and that the membership and individual members continue to grow with it.




              Thanks very much for your post. I learned from the links that you provided. When spinewire became a commercial site in the form of Cando, the founders of spinewire had many discussions with Cando about the target audience and the purpose of the site. In the end, the commercial aim of Cando and the informational/community aims of spinewire did not mesh. Cando wanted the forums to be a tool in making the Cando site a "gateway" to disability. While I fought to maintain the forums as an informational and community site for spinal cord injury, Cando had visions creating an Amazon for people with disability. In the end, the venture capitalists who funded the site pulled out, leaving the community bereft. That is why when I created CareCure, I did not want that history or commercialism contaminating the site. For people who are interested a blow-by-blow history of that turbulent time, please see a log that I kept of those days.

              When I started carecure, the mission or goal of the site was to provide information and I had hoped that a community would form. A community has formed and therefore it is time that we think about re-organizing carecure to nurture and meet the needs of that community. To date, we have been putting in a forum here and forum there when necessary. While this is not a bad approach, some growing pains are occurring and there are increasing conflicts between community and informational needs of the site. Some people are saying that the main mission of carecure is or should be community development. For example, chick posted passionately about the carecure community mission. Suzanne Poon has proposed essentially a cure advocacy community. We are forming coalitions with other communities, e.g. and PainOnline. A tight-knit caregiver's community has developed.

              We must develop a plan. Because forums are intrinsically limited in how and what they can present in terms of information, we will need to establish satellite web sites to support community and informational initiatives, use these satellite web sites to summarize and to present information from the forums and to drive traffic to the forums. We need to facilitate interactions between carecure members beyond forums and chats. For advocacy purposes, we need to develop consensus mechanisms and these probably need to be done in the form of face-to-face meetings. The last is important if we want to have legislative impact. Finally, we need to develop some fundraising mechanism and find a way of reducing the site's dependence on me. I have been the site's chief fundraiser, poster, and administrator for over five years. Sigh.



                marm, I am so glad that you are back on. I like the suggestion of a new member's page as well. Wise.


                  Wise, I've never left. [img]/forum/images/smilies/smile.gif[/img]


                    I can almost feel the weight upon your shoulders. I hope this hasn't been too exasperating for you. In the end, a greater good will result from our being allowed the opportunity to challenge our own perceptions and increase our understanding of one another, hopefully enabling members to better communicate with one another and share those experiences that are integral to the dissemination and exchange of information that takes place.

                    I don't believe that community and information needs are mutually exclusive. I was never implying that community takes precedence over information sharing, but that the information that is shared on CareCure takes place WITHIN a community of people with shared experiences and goals. Information may be the primary goal, but I thought we needed to talk about how this information sharing serves/benefits the people who are receiving/sharing this information.

                    >Information is available :
                    Why? How does it serve the SCI (and related) population? What is the reason/purpose for making this information available? Etc.

                    Information sharing could be seen as a means to enable many things:
                    Education - (personal and public)
                    Advocacy - (for self and others)
                    Coalition building
                    Understanding -(needs, issues, problems, people)

                    All these things take place WITHIN a community of people, connected through the net and through CareCure, who continue to foster growth, development and progress towards similar/shared goals through continuous exchange.

                    As people find the information valuable and meaningful to them, they become more willing to become a part of this community and share of themselves, their experiences, with other members, all of whom are then contributing to the wealth and diversity of information available here.

                    When I joined, this was CareCure Community. The relationships I've seen develop; the support provided to members; the knowledge, resource and tools gained, offered and utilized by so many to help themselves and others, reflected that CareCure Community name - all through the sharing of information (information includes personal experiences and insights).

                    Some may not agree, but I think this kind of discussion is necessary and critical even, to understanding changing needs and moving forward to meeting those needs of all who come to this site and making the community what it is.


                      chick, thank you. I agree that community and information needs are not mutually exclusive. However, much of our growing pains currently are a result of community conflicts. I agree that it is important to ask the question what the information is for and how it serves or benefits the people.

                      One of the original reasons for starting the forums was the limited understanding that many people with spinal cord injury have of their own condition. With many clinical trials coming up, almost daily reports of breakthroughs in the news, and the increasing number of charlatans who are preying on the community, the main goal of the cure forum was to provide up-to-date and reliable information, to allow people to ask questions and get answers quickly, and to share information.

                      The care forum fills a gap for many people. Many people and families come home from rehabilitation without having learned all that they needed to take care of themselves. Their doctors are not only hard to get a hold of after leaving the hospital but often don't have answers to the questions that nurses know. As people can see, the gaps of knowledge can be huge and can range all the way from mundane issues to very difficult questions.

                      From the very beginning, the Life Forum had a very different informational goal. It recognized the fact that people with spinal cord injury have a life and that this life may be different. It has been my experience that many people and families with spinal cord injury don't know other people and families with spinal cord injury. For example, many people who come to our Rutgers Open House may not have spent much time talking to other people with spinal cord injury, to share problems and solutions.



                        I have learned far more from participating in this forum than you may have expected. In addition to receiving invaluable assistance with my husbands SCI and all the complications that ensued; I have been able to share my newfound knowledge with local physicians, family, friends and others affected by SCI and a multitude of other illnesses and injuries. It amazes me how all I have learned transcends to countless other issues and experiences.

                        Five years is a very long time and I hope someone will venture forth to bring the assistance you need. I will remain forever grateful for your devotion to all of us on this site. I am still learning and will continue to visit this site for knowledge and companionship. I try to imagine what it would have taken for me to find the information elsewhere that you have provided for us here. It is very simple to conclude that my husband and family would have been far more greatly challenged to progress to where we are today without your kind assistance and those who share there experiences here. Thank you Wise and I hope you receive the support from this community that you must now have. Kath


                          Dr. Young said:
                          we will need to establish satellite web sites to support community and informational initiatives, use these satellite web sites to summarize and to present information from the forums and to drive traffic to the forums. We need to facilitate interactions between carecure members beyond forums and chats. For advocacy purposes, we need to develop consensus mechanisms and these probably need to be done in the form of face-to-face meetings. The last is important if we want to have legislative impact.
                          I agree.

                          Dr. Young said:
                          Suzanne Poon has proposed essentially a cure advocacy community
                          Let me know if I can help in any way! [img]/forum/images/smilies/smile.gif[/img]




                            Dr Young:
                            I can not imagine what it would have been like, my life after my brother s injury without all the support and hope we find in this forum, of course you can research all over the world in the internet for theorical information, but the quality of the people, the sense of community and all the innumerable reasons I may find, that is what make this place is unique.
                            From the bottom of my heart Thank you, for your commitment, help, kindness and most of all for really care. I think we would follow you anywhere to support in any way we may.
                            Excuse my english....




                              The debate and question about what CareCure is about - it's mission, purpose, who and what it serves - seems to resurface every so often. It may be a good time to revisit this thread .... again.

                              Maybe people can step back and read what Wise has written about this. Let's hope people will not only read, but truly listen.

                              CareCure is a place he create as a service to us, and the least we can do is show it, and him, some respect.