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Thread: I want combo trials, and now!!

  1. #131
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    Quote Originally Posted by 0xSquidy View Post
    I'm definately listening.
    let's say me too.

  2. #132
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    Should we assume that DA has no expectations of the CC membership as to cure efforts?

    If no one else has anything to add I will try to do a summary of what people said they wanted the CC membership to accomplish and how they could do it over the next few days. I sort of thought more people might have more to say.

  3. #133
    Just read this topic. Wise, we never funded any speaker expenses. We were most fortunate that the speakers valued the opportunity enough to pay their own way. Our focus with any extra funds was always to keep costs down and grant scholarships so some ppl didn't have to pay the (fairly nominal) entry fee.

    DC is so very expensive. Last time I was an organizer, coffee was $80 a gallon, for example. Renting meeting space is insanely high. A rally alone can be done, and done well, for less than $25K. (I'm pretty sure. If anyone gets serious, let me know. I have the info, just have to dig it up.)

    Entry fee never began to cover the meeting cost. Selling sponsorships was the way we covered those expenses.

    I think someone needs to hold rallies in DC, I've always thought so. If I weren't so sick I'd sure be happy to help. It's unfortunate that it's so hard for many ppl to get there, but it is where the government (and the funding) is headquartered.

    Again, I'm experienced but ill. If anyone wants to pick my brain, it's available. The 1st time we started from absolute scratch. I'd have loved to have had some clue about what to do.

    Also, if somebody steps forward and walks point on something like this, they need to have thick skin. If you stand out from the herd you will be shot at, as far as I can tell.

    Oh yeah. We got the CDRPA passed, which was huge. Now we need to get it funded, which will also be huge. And it was only the beginning. There is a lot of work yet to be done in DC. It has to be done by somebody with political inclinations, though. We have a void there that needs to be filled.

    The organization ACTUP has compiled oral histories of their advocates. These detail the organizations, leaders, meetings, strategies. They are high on the list of world's most successful health care advocates. If anyone really wants to do something in DC, I'd recommend starting w/ getting that background. Some of those advocates are still alive and respond to emails, in fact.

    LOL, I keep adding to this. This is where my heart lies. I guarantee you that my DC-rally organizing experience wasn't wasted time. I believe 2% of bills are ever passed into law. It takes a lot of ongoing work to get anything done in DC, but it CAN be done. It's frustrating and demoralizing (probably worse for Oklahomans like me) and you meet wonderful ppl, and some godawful slime as well. But it can be done! Our demographic makes it v. difficult. We're not too mobile, not too rich, many can't travel alone. But it's worth it to see 200 ppl in w/chairs seizing their rights...and eventually it pays off.

    For those of us that figure it's game over (and I just turned 50, 10 yrs post-sci, so I've reluctantly joined you)-there's nothing wrong with doing something for the greater good. If you can mobilize and help the 11,000 that get paralyzed in the US this yr, you won't die with a wasted life behind you. At least that's what I tell myself as I sit here sick day after day...
    Last edited by betheny; 04-29-2010 at 11:55 PM.

  4. #134
    Betheny,

    Thanks. It must be one of the first times that so many prominent speakers are covering their own travel costs. I congratulate you and the W2W leadership.

    The costs and task of organizing such meetings and lobbying efforts usually come from a national organization. We have two such organizations in the spinal cord injury field. One is the Christopher and Dana Reeve Foundation. The other is the National SCI Association.

    One of the things that we should consider is perhaps joining forces with one of these groups for the lobbying.

    Wise.

  5. #135
    I've thought of that collaboration angle. We've had great co-operation over the years, but never found anyone to buddy up and even assume half of the expenses. Sometimes I wonder if it might be best to work it from a non 501(c)3 angle. Nonprofits really aren't supposed to lobby. That's part of the reason the big orgs seem to spend so much on quality of life, even when talking cure.

    I'm no longer on the u2fp b.o.d, but they have more than replaced me with some truly amazing advocates.

    CDRF has a separately funded branch for politics, using the 501(c)4 angle, I believe. Do they have any lobbyists currently on staff? They used to have some wonderful ones.

    All I know is, if you're going to work in DC, you need to be able to spend some bucks on politics!

    It was (and still is) incredibly generous for the researchers to donate their time and pay for their own trips for the W2W symposiums. It still amazes me, honestly.

  6. #136
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    Quote Originally Posted by betheny View Post
    I've thought of that collaboration angle. We've had great co-operation over the years, but never found anyone to buddy up and even assume half of the expenses. Sometimes I wonder if it might be best to work it from a non 501(c)3 angle. Nonprofits really aren't supposed to lobby. That's part of the reason the big orgs seem to spend so much on quality of life, even when talking cure.

    I'm no longer on the u2fp b.o.d, but they have more than replaced me with some truly amazing advocates.

    CDRF has a separately funded branch for politics, using the 501(c)4 angle, I believe. Do they have any lobbyists currently on staff? They used to have some wonderful ones.

    All I know is, if you're going to work in DC, you need to be able to spend some bucks on politics!

    It was (and still is) incredibly generous for the researchers to donate their time and pay for their own trips for the W2W symposiums. It still amazes me, honestly.
    First, I am sorry you are so sick. Second, I do think we should build up our own group and, once we have something to contribute, join forces with a national organization who will give CC a voice. SCI needs a dominant organization with aggressive leadership and coordinated effort. And, we need an organization to keep moving forward even when we as individuals get sick or tired or just want to check out of the effort. Third, as you say, one could go on and on, but I just want to thank you for your effort. Last, even if we may not benefit as individuals, we all need purpose in life and what better purpose is there than to contribute to a cure for SCI for our younger membership and those who have not yet arrived at the trauma center.

  7. #137
    swh2007-Thank you, I appreciate it. I keep hoping to get well someday...

    It will be interesting for me to see if advocacy can be arranged via CC. I've tried and failed in the past, but it was a whole different dynamic back then. Go get 'em, and again if I can offer my experience I'm happy to help! You're absolutely right that an org needs to be strong and diverse enough to handle illness, burnout, etc. Advocacy is draining, I always said it was a young person's game. It always seem the older folks that have the focus, tho. The younger ones w/ sci have so much to do to get their futures squared away.

  8. #138
    Betheny, what futres are your speaking of?

  9. #139
    IME, rallies on the Mall or Capitol Hill are very good for firing up your constituency but accomplish very little politically or for raising lasting awareness of the issues. There are so many groups holding rallies (big and small) that they all blend together. It's a lot of expense and effort that I think would be better spent on lobbyists, direct action organizing and training new advocate leaders.

    The value in having a rally comes with getting the people who attend to go meet with their three Members of Congress (MOCs) or their staff while they are there, and then keeping them motivated after the big event to continue to write letters, make phone calls and in-district visits to their Members.

    The classic case study in why rallies aren't effective is the Million Mom March for gun control. Both got a lot of coverage the day they happened and were attended by a lot of people. Neither one accomplished squat politically, and post-event, the leaders failed to do anything to keep the people who the rally fired up engaged and pressing the issue forward. And the people were more than willing to take action -- a gun control advocacy web site I managed at the time signed up 80 unsolicited new members a day during August, the month after the event and the time when nothing is happening legislatively because MOCs are on break at home in their districts.

    I'm a Saul Alinsky ("Rules for Radicals") organizer. Alinsky believes that the most effective tactics are those that are inside of the experience of those you are organizing (i.e. they have to be comfortable doing it) but outside of the experience of your targets (i.e. it needs to be different and hopefully throw them off-base). Rallies meet the first criteria but not the second.

    Instead of trying to plan and pay for getting people with SCI/D to DC for a rally, now is the perfect time to help prepare groups of folks to meet with their MOCs at their district offices during the August recess. Big advantages to this: no/low cost to participants and organizers, same impact than if it happened in DC, better chance for in-depth media coverage (people in wheelchairs, especially those with service dogs, are magnets for TV cameras and newspaper photographers), and I'm pretty sure that having an office full of articulate crips in chairs with clear demands for action (support the appropriation and full funding of $XX dollars for the CDRPA in the 2011 budget cycle) is well outside of the experiences of many MOCs.

    The CC aud/vid chat room could be used for live trainings, and all advocacy training materials as well as talking points, FAQs, etc. could be uploaded to a thread. The regional/state forums are the perfect place for local folks to hook up into groups of constituents and make their plans for the visits. And the organizers could have their own forum to track which MOCs are covered, which key targets (members of the House and Senate appropriation subcommittees for health and human services) still need constituent visits/recruit people to do those visits, track which MOC's are on board/opposed and target our efforts on those who remain undecided, and plan and execute the follow-up activities needed to keep advancing our goal throughout the 2011-2012 authorization and appropriations processes.

    It's still going to take a lot of effort, but it's a lot more achievable, affordable, and effective than a DC rally, and could happen a whole lot faster, too.

    Just my $0.02. SWH, hope that answers your question.
    Last edited by thehipcrip; 04-30-2010 at 03:19 PM.
    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


  10. #140
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    Quote Originally Posted by betheny View Post
    swh2007-Thank you, I appreciate it. I keep hoping to get well someday...

    It will be interesting for me to see if advocacy can be arranged via CC. I've tried and failed in the past, but it was a whole different dynamic back then. Go get 'em, and again if I can offer my experience I'm happy to help! You're absolutely right that an org needs to be strong and diverse enough to handle illness, burnout, etc. Advocacy is draining, I always said it was a young person's game. It always seem the older folks that have the focus, tho. The younger ones w/ sci have so much to do to get their futures squared away.
    I hope you get well, also. I cannot "go get em" but the CC membership could decide to do it. We need more people to post what they want from the CC membership as to a cure and how they think we should do what they want.

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