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Thread: Advocating on deaf ears

  1. #1

    Advocating on deaf ears

    I find it interesting that many here who advocate for research, etc. are really talking to the wrong audience.

    Case in point. There are approximately 6,600 CC members from all parts of the globe. Based upon past statistics there are greater than 10 million people worldwide living with sci. What's their greatest concern - hands down its Care. Why? Because they have no exposure to CC or access to the information that would help them stump for a cure.

    The membership here is paltry compared to the potential / probable sci'd universe of individuals but most of what we do is go around and around talking and educating each other.

    Newsflash, this is time wasted. We who are here daily, weekly, monthly, even semi-annually are up to date and generally in the know. Its those individuals outside of CC who need the education, the enlightenment, the hope.

    So, here's a challenge. For the next 12 months each of us should direct and/or recruit 10 new people to CC. If we do this we will then have 66,000 people stumping for advocacy, research, etc.

    There is strength in numbers. We need more numbers. Talking exclusively in circles to ourselves is boring and a waste of our time. To truly shake up the establishment and initiate change we need more of us. Our goal should be 100,000 members in 2005.

  2. #2
    Chappell you are brilliant, you are right-Maybe if CareCure took a stronger stand on Care it would help bring in more members.
    sorry for the bold print

    Care sells the cure! It brings credibility and trust! And also shows the need for the cure.

  3. #3
    b, your childish behavior grows with every post. Do you realize how pathetic you look?

    Back to topic. The idea is to improve membership to then garner cure support so that possibly your son could regain function and that your crusade for wcbb would simply then become a fart in the wind.

    Funny that you weren't at the Rally?

  4. #4
    I was travelling with my son back from Arizona at the time of the Rally cause NJ doesn't recognize his needs

    And as far as Farts in the wind a cure would probably mean more people would be available to play WheelChair sports- you really are an axxhole and I am surprised you are a moderator.

    [This message was edited by b on 06-13-04 at 02:44 PM.]

  5. #5
    Also you Dxxkhead you feel to realise that those ten million people even after the cure will not be running around like they did before. Maybe Acutes will. To me a cure would be more independance, like being able to get out of the wheelchair to put it away in the trunk and then walk to the drivers door, or not having to cath or do a lengthy bowel program. So don't trash the care issues. Otherwise your salesmenship is false advertising. And even if there was a miricle and those ten million people would be able to play AB sports its still a long time off.

  6. #6
    Bob, lay it out plainly for us here, if you don't mind. Is the basketball court at Rutgers not accessible? Are there any students at Rutgers who want to play wheelchair basketball? How are they not complying with the law?

    -Steven
    ...an affluent suburb. 3:30 in the afternoon. 64 degrees and cloudy. the white house declined comment.

  7. #7
    I supplied information in the sports thread.
    thank you

  8. #8
    Whoa, everybody. Take a deep breath. No personal attacks, please. Bob is entitled to his opinion that care is important and should be emphasized. Basketball has nothing to do with this topic. I am working hard on getting wheelchair basketball to Rutgers. If there is some way that better access and care can be made available in New Jersey and the United States, I am sure that we all would like to see it happen. Wise.

  9. #9
    Chris, I think that your idea of recruiting more people to CC is great. We could become a powerful advocacy group for research. However, our CARE Forum is extremely active - check the numbers. I go to the CARE Forum first, with every visit, to see if there is something new that I can try for one of my nagging SCI related conditions or, perhaps something that I might add that could offer someone another option in their search for relief of some sort. CC is the first place I go for both care and cure information. Sharing this website is a gift to the new recipient. Adding to our numbers will help us all in all areas. Ten new members from me by the end of the year - I gladly accept the mission!

    Karen M

  10. #10
    Karen, reading posts on pressure sores and bowel treatment does fall under the heading of care, and this site does a great job on that. But how strong has it been on care advocacy? I also understand you list cure advocacy as your interest on your profile. Please be fair!

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