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Thread: I want combo trials, and now!!

  1. #161
    My personal bugaboo was finding an affordable symposium venue and hotel within wheeling distance of the metro. O, the maps I've drawn! At first I worried about accessible Port-a-Potties...that 1st yr they seemed an unspeakable luxury.

    The rally itself is simple, once you know. You hire a stage and sound company, they set up. You get speakers. You promote. You lobby. The hard part is-you pay! (It sounds so easy. Year 1, we thought it would be Wise and me on a piece of cardboard w/ a karaoke mic LOL. That thing took on a life of its own!)

    The hardest part is probably coordinating the lobbying component. That's not hard, tho, if you have motivated lobbyists.

  2. #162
    We were always lucky, we never lost $$. We were also EXTREMELY motivated to sell sponsorships etc. It would be so much simpler with a $30,000 donor. LOL, wouldn't everything?
    Yeah, the $30k grant that first year helped at lot (that was the exact amount, too -- it went down by $10k each year). But the actual cost of the EVENT was about $120k, which included salary for one FT organizer/planner and part of my salary (5 percent) as well as mandated scholarships, the cost of renting the Lansing Civic Center, etc.. We raised the additional $90k needed through sponsorships, program ads, reg frees (PwD rates were nominal but we charged big bucks for medical professionals, vendors, etc.), tickets to a dinner and dance....yadda yadda yadda.
    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


  3. #163
    I never understood why vendors weren't more eager to peddle their wares at the symposium. We always had a perfect set-up. It just isn't their usual business model, it's like they couldn't think outside the box. It's a perfect venue for Ti, Froglegs, Roho, caths etc. The ones that got it were the exercise-based recovery equipment and therapy crowd.

    The researchers were also great. They immediately saw the value in presenting their work to the people it is designed for.

    Can I ask what it cost to rent the Lansing Civic Center? Always curious to know how DC compares.

  4. #164
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    Quote Originally Posted by betheny View Post
    The core of the original rally committee went on to form Unite 2 Fight Paralysis. Most of the rest of that committee kind of retreated, it was a one-time thing for them. U2FP is still here, doing good work, they just never wanted that political focus. They see their mission as empowering, uniting and educating the sci community...which involves taking the Working 2 Walk symposium on the road. Last year was in Chicago, this year will be Phoenix (November 2010).

    I left the board of U2FP 9 months or so ago. They needed someone w more reliable health. They have really great leaders, I assure you.

    My heart remains in DC, or any backdoor initiatives like Hip Crip devised. You have to get your face in front of those legislators. They need to see you in a wheelchair, meet your kids and/or parents, begin to realize the true cost of this injury!

    I'm beginning to think you might be able to mount another rally initiative from CC. Your first step is to pick a date, then a website. Again, you might start looking at those ACTUP oral histories. Our 1st rally in DC was in 2005; if you search through the Cure forum for rally, early 2005, you can see how it happened. You'll also see how it nearly self-destructed...that's what happens when you have ppl w/ secret agendas.

    And that's all I need to say there. PM me if you ever need more details. It really is almost all public, on CC.

    Do you know someone trustworthy that can build a website?

    One wrd of advice-I don't think you can do democracy on CC. It will drive you nuts if you try. You can compile a committee of volunteers, tho, and implement democracy within that group. Ultimately, the reputations and even finances of that organizing committee are on the line. Only fair that they make the decisions imo.
    I think the first thing we need is a "virtual" rally on CC. I would be thrilled to have 1200, or even 300, CC members say "I want a cure and am willing to do whatever I reasonably can do to help get it."

    I think you are getting a little of that old fire back.....

  5. #165
    Oh, I never lost the fire. Just the strength! It is hugely frustrating to know what you want and need to do, and be too feeble. Of course I'm preaching to the choir on that front, here at CareCure!

  6. #166
    About picking a date for a DC event...besides consulting the Legislative calendar and giving much consideration to the weather, remember that legislators are basically only there Tues, Wed, and Thurs. Lobbying = a bit pointless on Mondays and Fridays.

    Just thought I'd post that before I forget.

  7. #167
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    Quote Originally Posted by betheny View Post
    Oh, I never lost the fire. Just the strength! It is hugely frustrating to know what you want and need to do, and be too feeble. Of course I'm preaching to the choir on that front, here at CareCure!
    Sorry to mis-characterize it. Yes, it sucks. But we all have something left to give, even if it is just a mind-set, don't we?

  8. #168
    Well, it's nice to think so. This knowledge I acquired during that period has seemed kind of useless but I think it could be very valuable if some whippersnappers wanted to take it and run with it.

    What are you visualizing w/ your virtual rally?

  9. #169
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    Quote Originally Posted by betheny View Post
    Well, it's nice to think so. This knowledge I acquired during that period has seemed kind of useless but I think it could be very valuable if some whippersnappers wanted to take it and run with it.

    What are you visualizing w/ your virtual rally?
    Oh, you have a lot to give. I'm not sure how to do a virtual rally Maybe a poll? Seems like we need to do some more talking and test the waters a little more. All I know is we can't expect anyone else to care if we don't care.

    We need some more people to jump in here!!! A few people posting to each other isn't enough.

  10. #170
    Senior Member rdf's Avatar
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    You should fill out your profile so folks can know a little about you swh. Sometimes people are leery when not knowing anything about a person, and thus are hesitant to speak their minds. I too would like to see more people join in with their voices and views on how to organize the CC community so that the greatest impact is achieved.
    Quote Originally Posted by swh2007 View Post
    Oh, you have a lot to give. I'm not sure how to do a virtual rally Maybe a poll? Seems like we need to do some more talking and test the waters a little more. All I know is we can't expect anyone else to care if we don't care.

    We need some more people to jump in here!!! A few people posting to each other isn't enough.
    Please donate a dollar a day at http://justadollarplease.org.
    Copy and paste this message to the bottom of your signature.

    Thanks!

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