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Thread: Agenda for Washington April 12

  1. #41
    With our USA budget issues as they are, I really think we need to emphasize the incredible cost savings to our economy a cure would bring. Give our legislatures a reason to divert funding to the CRPA.

    Sue

  2. #42
    Senior Member mjschaef's Avatar
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    Please feel free to use me as the name from Illinois (Chicago). I want very badly to go to Washington in April. Unfortunately, I was injured recently, and have subsequntly used all of my $$$ and time off from work. If there is anything I can do from here, just let me know.

    Matthew J. Schaefer
    T6 Incomplete 8/27/04

    Originally posted by Suzanne Poon:

    Originally posted by Clipper:
    I don't think we need signatures, per se. As long as we have names, hometown and maybe injury level, date of injury, relation to injured person, etc. I think we can get at least one person from each state to lend us their name pretty easily. Posting in the chapters section or even going through Quest for a Cure would be a good idea. A quick look suggests we have support/names from:

    Florida (Faye)
    New Jersey (Bob)
    Oregon (Me)
    Oklahoma (Betheny)
    Rhode Island (Curtis)
    Virginia (Scott)
    Maryland (Cheesecake)
    Texas (hope2findacure)
    New York (metronycguy)
    California (buckwheat)
    Minnesota (Susan M)

    As for signage, I dunno. I'm thinking of production costs and logistics. Since participants will enter buildings, it might be better if we had a banner or something that can be carried by two people and easily stowed. Maybe it could say something like, "UNITED, WE WILL STAND."
    Clipper,

    Asking members from each state to lend us their names is defintely an aggressive approach! You have a quick mind.

    Since you mentioned about banner etc., we should begin to think about searching for sponsors for our cause, big or small. I can contribute to a certain extent for sure, even though it might be minimal.

    One suggestion here: we may also consider to do a small fundraiser in our own home towns in order to support ourselves with the cost of participation and to kindly donate the residual amount to the cause!

    Suzanne
    --------------------
    "On November 2 the voice of the people was heard. I promise not to imitate it out of respect for the mentally retarded" - Lewis Black (Comedian)

  3. #43
    Originally posted by Wise Young:

    Susan, if you go to the main carecure web site (at Rutgers, http://sciwire.org) you will see a number of articles that I have posted. There is a lecture that I have given many times on there as well, entitled the "Basis for Hope in Spinal Cord Injury".

    Over two dozen therapies have now been reported to regenerate the spinal cord and restore function in animal studies of the spinal cord. The laboratories are working as fast as they can within the limited resources that are available to them.

    Because most companies (particularly large pharmaceutical companies) regard spinal cord injury as a "small market", they have been reluctant to invest in spinal cord injury research. Only in the past three years have some of the deep-pocketed companies begun investing. This includes Novartis (Nogo antibodies) and Biogen (Nogo receptor). On average, it costs a pharmaceutical company about $800 million and 11 years to move one therapy from discovery to market.

    So, this is where the government must step in. The CRPA originally proposed to establish 6 paralysis centers that would be the backbone for a network of clinical and basic science centers to collaborate. It had asked for $300 million over 3 years to do this. It is now an unfunded mandate to NIH, asking them to establish collaborative centers and place a higher priority of treatments to reverse paralysis. These include not only therapies to regenerate the spinal cord but also rehabilitative therapies. The bill was held up in committee for several years.

    At the present, care and support of people with spinal cord injury is costing the nation over $10 billion per year. The federal government through NIH is spending less than $100 million per year in research to reverse spinal cord injury. A significant fraction of these funds are being spent on epidemiological and rehabilitative studies. Perhaps about half of these funds are devoted to curative therapies.

    My personal preference would be a bill that would allocate $300 million that fund a spinal cord injury clinical trial network in the United States and Canada. This network will substantially defray the costs of taking a therapy to clinical trial, reduce the setup costs of the trials, and increase the speed with which therapies can be taken to trial.

    At the present, when a therapy needs to go to trial, years may be spent raising the money, doing the necessary preclinical work to establish safety and appropriate clinical trial design, and organizing the clinical trial centers that would execute the trial. By reducing the cost and time needed to move therapies to clinical trial, I believe that more companies will be willing to invest in spinal cord injury therapy development.

    Wise.
    A post from Dr. Young late last year. I thought this might be helpful.

    Sue

  4. #44
    Banned Faye's Avatar
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    Matthew, thanks for your support from Illinois!

    Bethany, the map you posted sure makes the Holiday Inn- Hill look convenient.

    Clipper, thanks for you list! That rate of $99, is that a group rate already? When I called they quoted much higher. If we can get the rooms for $99, I think we ought to make the reservations as quickly as possible given that the "Cherry Blossom Festival" parade will be held April 9th, and people will be arriving in Washington for that.

    PS We still need more of the "for sure" and "likely" voters of the Poll titled Inventory for the Washington March, to e-mail, post or PT Betheny or myself their names, so we can update the list started in a post in the featured Activism thread at the top of the CURE forum. THNX

    [This message was edited by Faye on 01-23-05 at 03:32 PM.]

  5. #45
    Senior Member poonsuzanne's Avatar
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    Originally posted by Susan M:

    With our USA budget issues as they are, I really think we need to emphasize the incredible cost savings to our economy a cure would bring. Give our legislatures a reason to divert funding to the CRPA.

    Sue
    Sue, your word is heard and thanks for posting the additional info from Wise!

    Beth & Faye,

    I think we should soon start up a summary of the logistics/agenda under one single post if possible, and keep it revised on a daily basis. Obviously, it's very hard to wade through loads of post here in order to look for the specific required information.

    We can post the summary either at the bottom of Beth's opening post of this thread or we will create a new thread on this. IMO, on one hand, we ought to look organized; on the other hand, our valuable members here should be well served and informed of all the most updated details of the March.

    For example:-

    1. Date of March
    2. Time of March
    3. Route of March
    4. Slogans of March
    5. Rundown of March
    6. Hotel Accommodations
    7. Signatures from Various States
    8. Dress Code
    9. Permit Application
    10.etc., etc...

    Suzanne

  6. #46
    Senior Member poonsuzanne's Avatar
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    Originally posted by cheesecake:

    I booked a conference in DC last year, I will be happy to provide the details of accessible hotels as well as hotels that are accessible but no roll-in showers (I know). I will also be willing to provide contact info. I am from the region and can provide some logistical information.

    The Hyatt is totally nonaccessible for their restaurants, unless you want to go through the kitchen. The rooms are good, but that is about it.

    PT me with a request list and I will put together my info. Give me a fax number since that is how much of the information will need to be sent.
    Cheese, thank you very much for your strong support!

    Faye & Beth, since Cheese lives in the vicinity, she would be of great help to us with a diverse source of information.

    Suzanne

  7. #47
    Senior Member Leo's Avatar
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    You kids rock,

    It's doubtfull I can make it but, I can start drafting some press stuff and hand outs. Banners are cheap, I'll check tomorrow, there plastic and very easy to write slogans on. Some business cards for handing out probably is doable here also.

    I'm sure hoping some local DC area folks start reading this and step up.

    I'm doing a Walk A Thon come Sept. and if Sturgis works out and son's wedding, seems like a full plate, but man I'll try getting there.

    On some national disability email list, we'll see if they'll step up and announce it.

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

  8. #48
    Senior Member Clipper's Avatar
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    Faye: I got the $99 rate off a DC hotels website. I dunno how accurate the pricing was, unfortunately.

    Matthew: We have August 27th in common. Except my accident was in 1989. Thanks for your name!

    As for the banner, it could have one main slogan with a smaller slogan beneath to clarify our message. Think of it as a newspaper headline, with a smaller headline below that adds clarification. Something like:

    UNITED, WE WILL STAND
    Cure Research Is Freedom From Paralysis

    How about that?

    I tend to favor tactics that are subtle. That's why I think a semi-patriotic message wouldn't be all that bad. Choosing our words carefully, we can be effective without coming across as pissed off. (We are, of course, pissed off. We just don't want people to see that!) The slogan doesn't have to have anything to do with the CR bill, even if it is the focus of our march.

    Imagine the banner and our group as the subject of a photo - out of context with no explanatory language. The banner has to be concise, easy to understand and something that won't just make people shake their head.

    The cost stuff will be part of our media kit, no doubt.

    Update:

    Florida (Faye)
    New Jersey (Bob)
    Oregon (Me)
    Oklahoma (Betheny)
    Rhode Island (Curtis)
    Virginia (Scott)
    Maryland (Cheesecake)
    Texas (hope2findacure)
    New York (metronycguy)
    California (buckwheat)
    Minnesota (Susan M)
    Illinois (Matthew)
    Colorado (Chris C)
    South Dakota (Leo)

  9. #49
    Senior Member Clipper's Avatar
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    Originally posted by Leo:

    I can start drafting some press stuff and hand outs.
    Leo,

    Please coordinate with me on the press materials, as I am taking the lead on that.

    Send me a PT.

  10. #50
    Senior Member Clipper's Avatar
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    I just did some quick checking on banners. They aren't that expensive. We can get a good vinyl one for less than $100. Once we select what we want on it, I'll take the lead in ordering it. I will also pay for it. But I'll probably have it shipped to one of the organizers.

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