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Thread: UNITED FRONT & FOUNDATION OF CARECURE COMMUNITY - ideas on what we should do

  1. #1
    Senior Member poonsuzanne's Avatar
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    UNITED FRONT & FOUNDATION OF CARECURE COMMUNITY - ideas on what we should do

    Dear Dr. Young and valuable members,

    I urge all of us to unite together to get what we want! Kindly read the following and comment and act rationally on the proposed strategy. Thank you!

    A Preliminary Thought

    UNITED FRONT & FOUNDATION - BY MR. R. POON SR.

    I accept that all things and ideas said here may not come out entirely practical and correct. However, I hope the following will spark your fury in your heart to make this work and, in particular, I draw my gratitude to Tom Pierce for his inspiration:-

    1. Let's mobilize and organize a united front and foundation for the benefits and concerns of the SCI community;

    2. This foundation should be worldwide basis and headquarter in Rutgers University of New Jersey;

    3. This foundation shall collect donations or even minimum monthly dues from SCI registered person from all over the world to fund the administrative costs at the headquarter, research and promote legislations beneficiary to SCI community;

    4. This foundation should be run by a full-time chief executive and overseen by a council, members of the council shall be comprised of scientists such as Dr. Wise Young, activists such as CR;

    5. The headquarter based in Rutgers University shall be charged the duty to register all the SCI patients in the United States and their immediate family members;

    6. This headquarter shall correspond regularly to the SCI community of the benefits and concerns by way of emails and internet postings for worldwide audience;

    7. The foundation is charged with two aims :-

    a. to promote favorable legislations in the U.S.; &
    b. to appropriate funds to research projects under the direction of a special appropriation committee set up with scientists' support such as Dr. Wise Young;

    8. The headquarter should also help to organize individual State Chapter in the United States;

    9. Each individual State Chapter shall identify and monitor their elected congressional representative as to how they stand on legislations affecting the SCI community;

    10. A standard campaign tactic shall be derived to expose those elected legislators who are against legislations beneficiary to the SCI community. These tactics should be:-

    a. mobilize and organize demonstration in that State;
    b. T.V. interviews, school talks, public forum debate;
    c. fly in celebrated activists such as C.R. to fuel momentum and bring up public awareness;
    d. lobby other organized political group such as labour unions, student bodies, charity organizations for support.

    All politicians will only listen seriously if you are a visible united front carrying votes and money and in that order.

    Politicians fear nothing more than an organized campaign against them from a national organization across the land.

    The potential votes here is 450,000 plus many more and could easily go up to 3 to 4 million votes if the number of immediate family is included, such as parents, grandparents, brothers and sisters, uncles, cousins and lastly friends. It is absolutely right that no politicians in this world will act upon a sad story telling, only votes count.

    If this united front of foundation is a reality, then the SCI community will be as strong as UAW on a national political agenda for all politicians to chase for endorsement.

    Political strength could also be derived by favors exchange with other lobby group such as labour unions to reciprocate support for favorable legislation to one another.

    Suzanne

    [This message was edited by Suzanne Poon on 02-01-04 at 03:35 AM.]

  2. #2
    Senior Member glomae's Avatar
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    suzanne, i think another suggestion could be that there be a small committe representing each state to ensure that we are all focused and on the same page. guys we really need to be heard and soon!

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    My Thoughts

    I totally agree that to get something done on a national basis, the most effective course is through the U.S. Congress. Lobbying is more art than science; much can be done by allying ourselves with like minded organizations such as the National Head Injury Association, the American Associatiom of Automotive Medicine and there are many others. One of my questions is:
    If this is to be an international organization, why would anyone outside the U.S. give money to influence legislation in this country? Also, the UAW has been losing members for more than a decade, as is the case with most trade unions. The strength of any organization is in its grass roots and its ability to rally its members on important issues. I look forward to reading and learning more about this proposed organization.

  4. #4
    Member THP's Avatar
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    WAZABIKER - Without meaning to sound arrogant,I think most would agree the US has some of the best medical minds/facilities in the world. And, although the US is behind the curve in finding a cure, the potential is certainly there. Additionally, accessibility to US Doctors might be much more attractive to many.

    In your profile you describe yourself as a retired lobbyist. Perhaps Suzanne and/or others could use your expertise by you tutoring or giving pointers on the fine art of lobbying.

    Better yet, would you be willing to get involved?

    Tom Pierce

  5. #5
    very good Suzanne but why only the US?

  6. #6
    in the past sci research has been trully international and Wise has told us there is more collaboration in sci research than in most others - I think concentrating on US research only would be a backward step. Just a few examples

    1969 Geoffrey Raisman uses the first of a special kind of microscope and suggests that the CNS is plastic and therefore could be helped to repair itself (UK)

    1980 Albert Aguayo uses Schwann bridge graft to demonstrate in the brain and spinal cord that CNS axons will grow through the bridge and cross a gap in the spinal cord or brain(Canada)

    1997 Dr. Ramon-Cuerto performs first successful experiment with oeg cells and shows some limited return of function in rats(Spain)

    2002 Dr Huang in Bejing is performing fetal oeg transplants in humans and appears to get a small return of function and sensation in most cases (China)

    Just trying to illustrate that SOME of the major events have occurred outside US and therefore international is best

  7. #7
    I think this is a good idea. One reason to target the US (but not exclusivly) is that the US has money. We spend millions, maybe even billions on useless research ever year. If we had a lobby group or something to get the US to pitch in some of that money for SCI research it would speed things up.

    _____
    Learn from the mistakes of others, you won't live long enough to make all of them yourself.

  8. #8
    Senior Member poonsuzanne's Avatar
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    Dear members,

    Thank you for all the valuable response!

    Since this plan was drafted by my husband, Mr. Richard Poon, Sr., I will ask him to post a reply soon.

    Suzanne

  9. #9
    As Suzanne knows, I am not ignoring this proposal and have been gathering thoughts. Will post soon. Wise.

  10. #10
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    I'm 100% behind global collaboration, cooperation and speaking with a united voice however let's not reinvent the wheel.
    Experienced SCI research charities exist in USA, Canada, England, France, Australia, Japan and a number of other nations. There are already a couple of "United Fronts" in terms of cooperation in the US for lobbying governments state and federal (Carecure's Patricia Morton can add more here), and internationally with ICCP www.campaignforcure.org
    There is a long way to go, cultural and resource issues impact nations differently, but I would urge rallying behind these groups and bringing them along with through ICCP and Carecure rather than starting another foundation. Our resources are limited and stretched enough.
    In my opinion getting all the major groups to agree on a common name (it would great if SCI charities were as well known as IBM) would add weight to our message but achieving it globally would be tricky.
    Susan, I think SCI research lobbying and fundraising groups are most effective at a local level. I'm not aware of any such group in Hong Kong and or China but I would be very interested to know if there was one. If there isn't, maybe you could start one!

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