Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Nevada politics

Discussion in 'Action Alerts and Advocacy' started by judderwocky, Jul 24, 2010.

  1. judderwocky

    judderwocky Senior Member

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    So this is the carry over from the other thread.... the first XMRV conference....

    We have been discussing some of the behind the scenes poltics in Nevada and I some thoughts after several emails and phone conversations with the WPI... they clarified a few things to me, and it has helped me to understand what is going on ...

    here goes...Former Gov. Guinn ... who died yesterday.... had a huge amount of rep in the state... it seems he ran into the term limit.... he was well liked and pushed the original funding through as a favor to the whittemore family whom he was close with. The current gov (2007-) who has been in office for several years has continued the funding.... but from what i gather this has been a difficult sell and its possible without Guinn's continued presence in the Nevada political system, that the funding would not have remained. it was a battle to keep the funding.

    The current govenor is almost out... which means we will soon have a fresh new govenor...or the same.

    my guess is....if you have been following the political news lately it seems that Nevada is going to be facing some big budget decisions... lots of money issues. they will probably be running on fiscally conservative platforms.... its possible you will see platforms to cut the budget by flat rates... if so... this could really hit organizations like the WPI that no longer have strong "guardians" in the govenors office.

    We need to ensure before the election that the people running on both sides have been carefully educated about these issues. Whatever kind of communication we can figure out, we have to make sure as the budget crunch comes up, that we individually target every single candidate and help them understand our condition.

    we need to sell them on two things: finding cures and treatmens will ultimately be more fiscally conservative. we will be helping peole to be healthy, require less treatment and care, and to be more productive and happy.

    secondly to understand the signifigance and trailblazing nature of the research being done by the University of Nevada and the WPI. The WPI gets 12 million in state funds, and the CMM at UN gets the 77 million from the federal government (grants i think). the NIH by comparison gets a measly 5million for cfs research... Nevada's approach however is being shown to have international signifigance.... we have to make them understand that this research is ahead of the curve.... that more and more research across the country and globe is demonstrating that their researchers were right. this is a prestigous thing for the State of Nevada and serious credit to their medical and research systems.

    I think if we can program them something along these lines we could really help to secure the funding.... prevent its loss.... and i gather its going to be getter tougher and tougher to preserve medical research across the country.

    the issue is that they will be chomping at the bit to find money to take from programs.... 12 million is A LOT right now... especially if you are operating under the belief that its a fake illness..

    remember... as far as funding for CFS goes... this would be a huge chunk of the money going into research right now ... i think we should do everything to protect that value.... especially since Gov. Guinn is no longer able to do so... if you read between the lines notice that some of the staff at the WPI used to work for Guinn... he has been very influential in securing good labs ... pr... help etc... but he's not out there anymore.

    It might be good to take a different approach here in Nevada... we could start a positive sort of campaign... thanking nevada elected officials for their "trailblazing support of research in Nevada.... research that will lead the world in....." <insert stuff>?

    "you catch more flies with honey than vinegar"
     
  2. Forbin

    Forbin Senior Member

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    In the other thread, I suggested that it might be wise to rename the facility "The Kenny C. Guinn Center for Molecular Medicine."

    Why? Because I assume it would be more difficult for a sitting governor to de-fund something regarded as a previous governor's legacy.

    After all, no sitting governor is going to want create a precendent so that his own legacy might be de-funded by his successors, is he?
     
  3. judderwocky

    judderwocky Senior Member

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    brilliant !!!!!!!!! OMG.... This would be SOOO easy to petition for. This is the perfect defensive gesture we need right now to protect these funds. And Frankly, he deserves the recognition after everything he did.
     
  4. taniaaust1

    taniaaust1

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    Sth Australia
    wow.. im kind of shocked at that suggestion.. as the Whittemore Peterson Institute is named after those who got it off the ground
     
  5. judderwocky

    judderwocky Senior Member

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    He was a CLOSE friend to the Whittmore family... they went to HIM personally and he helped them secure the original funding... the whittmore family gave a huge chunk of money... but as acting gov... in 2005 he was the one that opened up those doors... he actually is the reason the wPI staff exists....

    His former Chief of Staff works for the WPI now actually.

    (my extended thoughts on him : http://xmrvaction.org/content/all-eyes-nevada )

    this is what the Whittmore family wrote about him

    "Our Governor and good friend, Kenny Guinn, agreed to place this project in his state budget. Legislative leaders who understood the potential benefits to both patients and future medical education in this state also began to offer their support. This new research facility was to house three significant interest groups: researchers from the University of Nevada’s Medical School; the Nevada Cancer Institute; and the Center for Neuroimmune Disease (now called the WPI). That winter, I gathered scientific information for a presentation to the 2005 state legislature, arguing the need for such a medical center. University representatives and Nevada Cancer Institute scientists did the same. Passionate pleas were made by several patient advocates in addition to our testimony. By the end of the legislative session, ten million dollars has been allocated to support a new research and medical office building5 (Figure 2). The main portion of the building was built from bond money which was based on the indirect costs of the researchers’ grants. My husband and I committed to give or raise an additional $5 million towards WPI’s portion of the building, and soon the construction began, bringing reality to a dream. "

    I talked with the WPI about this .... i believe he was a fairly large force behind the scenes and I think they would be happy he was honored...
     
  6. Forbin

    Forbin Senior Member

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    The building is currently called "The Center for Molecular Medicine." The WPI will be a resident of the building. I was not suggesting that they change the name of the WPI.

    http://www.medicine.nevada.edu/cmm/
     
  7. judderwocky

    judderwocky Senior Member

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    Right this is just the container building... its total budget is something like 77 million *total funds... which have come through a variety of sources... my understanding is that his clout helped push this idea off the ground.... the WPI with several other research groups will be inside... I think it would be a nice gesture to rename that larger building after him.

    Also... sending a petition out to elected officials on this would give us a chance to highlight the successes of the research he funded... a "preserving the legacy" type campaign.... it could be beneficial to both sets of interests....

    i just don't think it would have been a reality without his help ... throughout the senate... elsewhere... he deserves to be credited with it... especially in the future as this disease comes to the forefront of mainstream media and thinking... as im sure it will over the next decade.
     
  8. *GG*

    *GG* Senior Member

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    Concord, NH
    Not so sure about this. Is the governor a Democrat or Republican? I do not think anything with Democrat names is a good idea, people are tired of people naming building for "themselves"!

    I think a more neutral name is best!

    PS Not sure how the Tea Party people in that state will see this?
     
  9. creekfeet

    creekfeet Sockfeet

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    Eastern High Sierra
    Guinn was a Republican but such a centrist, he was sometimes called "RINO" (Republican In Name Only.) So he's an ideal bipartisan. I forget what, but early in his first term he named a building after a Democrat. Wikipedia says "Prior to leaving office, he enjoyed an approval rating of 66%, leaving office as one of the most popular governors in the nation, according to public opinion surveys." After all his support, his name on the Molec Med bldg would be a very fitting tribute.
     
  10. Forbin

    Forbin Senior Member

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    Yes. This may have gotten lost in the thread but former governor Guinn, who provided much support for getting the Center off the ground, died by accident last week. He would obviously not be naming the building for himself. I'm also not so sure that the current governor, also a Republican, could name the building for Guinn.

    Naming the building would almost certainly be the perogative of The University of Nevada.
     

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