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Thread: 2006

  1. #61
    We did have a National spokesperson, a truly super guy, but sadly CR is no longer with us. However even when he was here it seemed he was doing it solo. I really don't think that the message got out that there are many more people going through what he had to on a daily basis.

  2. #62
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    I live in the DC area and know tons of folks who would come but if the statement you are trying to make is funding for esc,you will put a real damper on alot of folks. I would be real interested but would need to see a mission statement for the march, who would be the spokesmen and a general guarentee that the focus would be on the overall cure and not esc.

  3. #63
    Yea...the mission statement should be that We want out of paralysis and neuro pain and we dont care how the cure comes about, we just want it now! No more playing with our lives. While all these old farts are making decisions on subjects they know nothing about they hinder science and the lives of people who are suffering. We are just waiting here on the sidelines and to them making money is more important than helping people.

  4. #64
    I really think if a joint effort March on Washington was listed on the web-sites of various sci related groups there would be a tremendous turnout.
    But, that may not happen because of human nature. It seems people have a vested interest in a group they are part of and don't want to share that with others. I have even heard of someone planning a march that coincides with a group they support. We need to get past that and plan a march when the weather is accommodating and think more about the whole picture than just a group you might have a special attachment too.
    It really seems the SCI community needs a unbiased clearing house of sorts to bring the common goals together. Without that we all go in different directions and even sometimes have disputes within the community.
    There needs to be a parent type of group that can bring all the efforts together. Not a dictatorship type of organization but one with the pure interests. Basically we all want a cure, we need the world to know more about what it is like to live with sci. That should be enough common ground to join together. As far as how the cure proceeds, I think first we should establish how very necessary it would be to have one. If we could accomplish that the rest would fall into place.

  5. #65
    Get Dana Reeve as a spokesperson. Top researchers like DRS Young, McDonald and Huang as speakers. Cap the event with a luncheon or banquet and each of us invite our congressmen to sit, eat and talk one on one.

  6. #66
    Senior Member Leo's Avatar
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    This could only happen if,

    CRPF, took it on.

    or

    you were able to do as Sue suggested. that will happen when pigs fly, IMO

    or

    someone with deep pockets sponsored it.

    The logistical planning and cost is the problem.

    An organization would have to offer the regular Joe stipends for travel and stay.

    Bob and others you are so right, this would be awesome.

    Bob I'm impressed with your enthusiasm, you get it

    Now if we can get the groups Sue was talking about, to get it

    We have to make them understand CURE is not nasty or their enemy.

    In my experience this needs to start at your local level.

    How many CIL's have in there offices a pamphlet/brochure that mentions the word CURE.

    Probably, Nada.

    Go to the CureParalysisNow web site and buy some brochures, take them to your local CIL, and demand they display them and hand them out when they do events.

    Check out their web sites and see if there's a link to CareCure.

    Get on their Advisory Board and shock them by saying cure in a conversation, and hand out a news article showing the success of a stem cell therapy.

    I've walked this walk and am very proud of the friends in South Dakota who have finally embraced CURE as a great thing. I don't think any other state can say they have the Director of their VR Dept. on their CURE research committee.

    It can be done.

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

  7. #67
    This could only happen if,

    CRPF, took it on.

    or
    Has anybody asked them?
    It might be that simple.

    Bob and others you are so right, this would be awesome.

    Bob I'm impressed with your enthusiasm, you get it
    There is much enthusiasm out there. I don't know of any family member that would feel different. We need to give them real options. Going to a $1000.00 a plate dinner or higher might be good for MP, but most people aren't superstars or wealthy enough to attend,How do we tap into the typical person that wants to be heard. There is no better or purer way than a March on Washington.

  8. #68
    Senior Member poonsuzanne's Avatar
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    I can see the momentum is rolling.

    Suzanne

  9. #69
    I'll try and make this brief.

    1. CRPF is, imo, struggling with leadership and direction. Having Darryl Mitchell as a new spokesperson is a negative. Having met and spoken with him I'm not impressed. Kathy Lewis is also non-responsive. There's more to it than Cure and clinical trials and they are very directionless currently. I wouldn't be surprised to see them fold in two-three years. Just my opinion - hopefully I'm wrong.

    2. Dinners and functions which I've attended with the likes of Dr.s McDonald etc. are simply not that focused on bringing the science to the patient in an urgent manner. There is a lot of posturing but very little, almost none, accountability or urgency on their part. Attention: Yes. Action: No.

    3. Federal attention is only as good as the urgency created and necessary. Economic validation vs. emotional motivation is the key.


    I certainly don't have the answers but I don't believe any real progress can be made unless we as a community rally and unite. Personally I'm working on many fronts to create and maintain the urgency.

    Good luck to all fighting the cause.

  10. #70
    My meal suggestion was intended as a way to get our congressmen/senators to sit down for some one on one disscussion with our group. I would like them to see more of us than a quick face show at a rally. The meal does not have to be elaborate and maybe we could each sponsor our legislator. Just a thought.

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