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Thread: Stephen Davies Update

  1. #771
    Peer-review is another part of the process that is a waste of time, yet is conducted over & over again. The only ones who suffer are those waiting/ wanting a solution to this injury, so no big deal right.
    Last edited by chasb; 12-24-2009 at 05:35 AM.

  2. #772
    Quote Originally Posted by Rollin Rick View Post
    We have lost our liberty in this country... Good luck because the government is not afraid of the people anymore... Bark all you want and you will get the brush off the shoulder... Especially the SCI community.
    Merry X-mas sunshine.

  3. #773
    Senior Member khmorgan's Avatar
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    Quote Originally Posted by Eileen View Post
    While I certainly hope a cure comes I think we have to be a little careful about the "angry mob" thing.
    Okay, perhaps "angry mob" was a bad analogy. Too much hyperbole, huh? I just meant that politicians live and die by their constituents' votes, so they do listen. If we are all quiet, then they assume we are happy. If we send letters, emails, and call them, their staff will tell them their people are restless. You don't have to be nasty or threatening, just encourage them to push the FDA for rapid approval of a desired treatment.

    I once read that for every letter or call they receive, they assume 3,000 additional people feel the same way. If you've never written, emailed, or called, then at least look up your representatives. For the House go to https://writerep.house.gov/writerep/welcome.shtml , and for the Senate, go to http://www.senate.gov/general/contac...nators_cfm.cfm .

    We aren't really looking for all our representatives to call the FDA and yell at them. We're just looking for them to support the ones who do.

    But, first, we need a safe and effective treatment for the FDA to approve.

  4. #774
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    khmorgan, totally agree with your statement above!

  5. #775
    KH Morgan, you are RIGHT.... The "angry mob" suggestion is correct, and should be done. Rick, maybe you should remember the angry gay community in parades, mobs, protests,on news programs and glut of letter writing that preceded meds made available to those with hiv.
    Our problem is that we HAVE shut up about this because we feel so defeated. And I don't know about anybody else on here, but when one has pain associated with SCI, HIV and a "death sentence" doesn't seem much worse. Last time I noticed, HIV patients were living fairly normal lives, and WE ARE NOT.
    SO YES I also believe we should ORGANIZE to push through treatments!

    Stay quiet in a corner and that is where they will LEAVE US. Bet on it.

  6. #776
    Okay, perhaps "angry mob" was a bad analogy. Too much hyperbole, huh? I just meant that politicians live and die by their constituents' votes, so they do listen. If we are all quiet, then they assume we are happy. If we send letters, emails, and call them, their staff will tell them their people are restless. You don't have to be nasty or threatening, just encourage them to push the FDA for rapid approval of a desired treatment.

    I once read that for every letter or call they receive, they assume 3,000 additional people feel the same way. If you've never written, emailed, or called, then at least look up your representatives. For the House go to https://writerep.house.gov/writerep/welcome.shtml , and for the Senate, go to http://www.senate.gov/general/contac...nators_cfm.cfm .
    khmorgan, brilliantly put! You are a natural born grassroots organizer.

    And you're right -- those who make the noise get the attention. Writing letters to the NIH is nice, but we have no direct power over them --we can't boycott them and take our money elsewhere if we don't like what they're doing (economic power), nor can we remove them from their jobs because they're not elected (political power).

    But we do have financial and economic power over Congress, who set NIH research priorities and allocate the funding to carry them out.

    The 3000:1 ratio is a bit high, but the concept is right on --elected officials do believe that for every person who takes the time to write a handwritten letter, there are 100 more constituents in their district who feel the same but won't take the time to contact them. Outside of personal visits, handwritten letters are the most effective advocacy tools we have. Original emails and faxes are next. Form emails, letters and pre-printed postcards are considered, but because they take little effort on the part of the constituent, they carry much less weight. Signing a petition is completely useless as a political tool to advance change -- it's used primarily by groups to collect names and contact info of potential supporters.

    There's an old saying in the grassroots/community organizing community:

    DON'T GET MAD, GET ORGANIZED!


    It works!

    But we need to go beyond letter writing. We need to go to candidate forums and tell them we won't support them with votes or contributions unless they make research a priority. Get them to sign a pledge. Hold accountability sessions for those already in office and aren't supporting our issues. Get the political parties to make our issues a plank in their platforms.

    CareCureGirl is right -- we can't afford to be ignored.
    Last edited by thehipcrip; 12-25-2009 at 10:41 AM.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  7. #777
    I think a combination of pain, societal oppression, and curiosity has given many of us cure mongers a voracious hunger for 'news'. I speaking for myself, but it would be nice to have a little update on the status of Dr. Davies research. Please someone correct me if I'm wrong, but are we in the process of waiting to see if some of the chronic research is published?

    I'm not ashamed to say that I've grown impatient or itchy with anticipation. It is human. Dr. Davies owes us nothing -- although it would be nice to look forward to a six-month update, especially for those who cannot travel or make it to the research symposiums.

  8. #778

    Thumbs up Fancy giving Dr Davies's lab a belated Christmas gift?

    You can do so by means of the following -

    Credit card link

    http://www.cuneurosurgery.com/research-davies.htm

    Alternatively if the donation needs to be sent via bank wire transfer then Tom Schuyler can be contacted at the university foundation for details on setting the transfer up:

    Tom Schuyler
    University of Colorado Foundation
    225 E. 16th Ave., Suite 900
    Denver, CO 80203
    Phone: 303-315-0984
    Fax: 303-813-7958
    Email: tom.schuyler@cufund.org

    As for making what we desire known, the more vocal the better. If a few sensibilities are offended along the way, well Oh Dear. Surely nothing could be much more offensive than being expected to 'like and lump' this dreadful injury until the day you meet your maker?? In the 21st Century no less!! And lets be honest, currently that prospect is all that some in this situation have to look forward to. No, this community has quietened, settled and censored itself for too long, be that by choice or otherwise. Yes there are many disheartened SCI victims out there, and who could blame them? I have always felt that the most astute way to deal with the negative feelings that inevitably arise from a devastating situation however, is to metaphorically take a stand against them. Support the research that will help you claw back what you've lost. Using the info above and giving what you can is, in my humble opinion, the best way to do just that.

    May 2010 be a good one ;-)

  9. #779
    FWIW donations to Dr. Davies are routed through the CU Foundation, which is a 501c non-profit. Therefore these gifts are tax deductible for most situations. Check with your tax preparer for additional information.

  10. #780
    keep (rolling) Walking

    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

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