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Thread: Da cure is coming

  1. #61
    rdf,

    Scientists are usually not clinicians and most clinicians are not scientists. Very few scientists that I know are involved in clinical trials and only a small percentage of active clinicians, particularly those taking care of people with spinal cord injury, are active in the research laboratory.

    Physicians are licensed to practice medicine and surgery. Just having an MD is not sufficient. Even having a medical license is not usually sufficient. One has to be a practicing physician in an accredited hospital. In order to carry out a clinical trial in the United States and receive grant funding to do so, one also usually needs to be affiliated with an academic institution.

    Some physician scientists can do both science and clinical trials. For example, John McDonald is able to do both. He is a rare commodity, a man who has a leadership role in both arenas.

    Wise.

  2. #62
    Senior Member DA's Avatar
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    Da cure is coming..." Sometimes, I feel like I am singing the refrain of a church hymn. I believe that the cure is coming but I don't know when. I don't know when because the obstacles to a cure are not scientific but sociological and economic.


    and political.

  3. #63
    Member Rebechi_Brazil's Avatar
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    The principal problem for the researches is really the lack of money. Here in Brazil, the researches done in USP (University of São Paulo) with the leadership of Dra Erika Barros and your husband Dr Tarcysio Barros are going well, but it could be very better and faster if had more money. The researchers are not concerned with the fame or similar thing, they are concerned it is with the deficient ones. When they get some progress, they said that will send a proposal for the Brazilian Government for the treatment it is done gratuitously for who cannot pay. In this case it will be made a training so that doctors of the whole country are prepared to do the surgeries.

    What leaves us very sad, it is that a lot of rich people exist for the world, besides here in Brazil, but these people don't make donations for researches, this selfishness is lamentable.

    I saw our friend's message Bent talking about Bill Gates, this man it is another that seems have the stone heart, has a fortune of almost 50 Billion dollars and makes donations with ridiculous amounts compared to your patrimony, and with certainty him this tends some I benefit related with income tax.

    The stranger of everything that is that difficultly we see paraplegic millionaire people. Up to now I only saw actor Reeves and Michael J Fox making some thing to help the researches.

    For production of military weapons what do true fortunes cost it doesn't lack money, did they already repair in this????

    Rebechi_Brasil

  4. #64
    Yes Rebechi you are right - money.

    Its the same tune I've been singing and supporting (on CC and outside), since I had my injury.

    I'm glad that others also understand this.

    Now, if everyone would work to raise $$$ vs. complaining that the researchers "aren't doing enough" we might really speed up the process.

    You can't get blood from a stone.

  5. #65
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    We need to figure out ways to raise more money and to have more media covering spinal cord injury. There is a lot of people out there that can donate a huge amount of money but don't do because they dont have knowledge about SCI. They usually donate to AIDS, cancer and other programs because they know more about them.

    I think that the population don't have idea of the number of people with SCI and the benefits that the cure will do. We need to create ways to inform the population about SCI as is done with AIDS, caner, obesity, etc...

    Might be good to create one new topic on this forum to discuss ways to raise money, to pressure senators, congressman and to bring more media coverage. We need to make things happen and the media on our side to have people talking about SCI.

  6. #66
    AMEN Dr. Young. It is one year later from the original post and the same bickering can still be seen here

    When will we work as a community?

    "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles"....C. Reeve 1998


  7. #67
    Dr. Young,
    You have hit the nail on the head with your opening statement on this thread.

    The first thing that I noticed is the order you listed you ideas. Although money is part of the problem, it is clear to me the real reason is your last comment, on the division of the spinal cord injury community itself. No one will get help if they're not asking for it.

    Much of this division happened as a result of therapists/couselors etc. who beleived it was not right for someone to be given 'false hope' (sic). This mentality has been passed down from one helping professional to the next. For this reason I believe it is even more important to change to ideas of the the general public and the helping professionals.

    The community is torn because of negative attitudes towards a cure by those people employed to help, yet the spinal cord injury community is told they need to come together and change everyone's way of thinking.
    This would be like trying to put a puzzle together, but the pieces are upside down so you can't see the picture. You could think you solved the puzzle but the picture is still wrong.

    First steps first. The helping professionals need to get thier act togther, and then do what they are paid for; help. No more false hope, its a cheap way out just because someone doesn't know what they can do to help. They only need to beleive.

    I've said it many times, there is only one way to change the attitudes.

    Only one.(hint: three words)

    Anyone have a comment on what they think it may be?

  8. #68
    Senior Member Leo's Avatar
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    Welcome to CureCare, Ricardog and Carl C.

    Cheesecake,

    "When will we work as a community?" Not in the forseeable future!

    Come on now, we've got a work force and most all know who they are, any newbie wanting to help out just email one of them.

    Ricardog,
    Might be good to create one new topic on this forum to discuss ways to raise money, to pressure senators, congressman and to bring more media coverage. We need to make things happen and the media on our side to have people talking about SCI.

    Do some more browsing and you'll find all kinds of congressman that need to hear from all of us just on the CR Bill for starters.

    Glad to have you on board and even happier to see you jumped right into Cure forum first.

    "All you have to decide is what to do with the time that is given you."
    Gandolf the Gray

  9. #69
    I did not discuss one common fallacy in the arguments made by people in the SCI Community concerning research funding. There is great fear amongst some members that research funding is somehow shunting funds away from care of people with spinal cord injury. I agree that there is not sufficient funding for spinal cord injury care in the United States and around the world. There are many people with spinal cord injury have limited access to even basic rehabilitative care, home care, equipment, and even medical care. However, it is important to consider the numbers. At the present, the federal government is spending less than $100 million on spinal cord injury research, compared to probably over $10 billion on care of people with spinal cord injury. Our government is spending less than 1% of the cost of caring for spinal cord injury on research to improve that care and the cure the condition.

    Note further that if therapies were to arise from the research that restored function to even 10% of people with spinal cord injury in the coming years, this would result in savings of over $1 billion per year. If even 50% of these savings were spent on spinal cord injury research and the rest were spent on care, everybody would be better off. So, supporting research would be a win-win proposition.

    Wise.

  10. #70
    Thanks Dr. Young, it's an important message that often falls on deaf ears. Many in the SCI therapy/counseling community believe that our focus should be on helping people adjust to a life with a SCI, have access to quality care, decent housing, employment opportunities, transportation etc., which is important but mention of cure is never included. There's the fear that the mere mention of it will undermine all efforts to get new injuries to focus on becoming positive, independent and productive citizens. And they'll be quick to tell you that "if it weren't for all the money going to cure there'd be more money for care." I don't know why that attitude persists even when presented with facts that show otherwise but as Carl indicated, it is widespread in the SCI advocacy community which is unfortunate because they're often the first people new injuries and their families are put in touch with. Those are the people who will exert the greatest influence on a SCI's views regarding cure and care and we wonder why SCI's hostile to the idea of a cure exist. It needs to be understood that one can seek a cure and carve out a decent life for themselves, the two don't have to be mutually exclusive. Until that message replaces the prevailing one, I can't see our community uniting behind a cure.

    [This message was edited by seneca on 11-04-03 at 12:00 PM.]

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