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Thread: Agenda for Washington April 12

  1. #11
    Hi Beth,

    I can't be there in person April 5th, but, I'm on board to help with the State of Minnesota planning efforts. I'm sure SydneyJo, Theophania, and Jessecj7, to name a few, would be glad to be part of a MN sub-group, as well. <I'm hoping to get Peter Morton involved, too>

    My only request to all: Keep the partisanship off the table. This way, all will feel much more united to participate. The liberal and conservative views are too polarized and will divide us.

    My vote for primary objective:

    Full passage of the CRPA, with funding. Take those promising therapies collecting dust on researchers shelves and fast track them into clinical trials here in the USA. Emphasize the billions this country would save by solving this issue. Of course, also include facts on the human suffering aspect, as well.

    Thanks,
    Sue

  2. #12
    Personally I think you'll be hard-pressed to find rooms for $79/night in the city, but I could be mistaken. Parking alone is $20+/day. Think about utilizing AAA discounts, group rates, etc etc.

    Regarding an email list, just let me know & it's done.

  3. #13
    Okay, info on permits, regs etc.
    From:
    Exercising Your Rights Of Political Protest In Washington, DC
    Prepared by the Washington, DC Chapter of the National Lawyers Guild

    Link to Excercising your rights site

    Each year hundreds of special events are held in the District of Columbia. Residents and organizations planning a special event are required to obtain permits to hold special events in DC. The following forms provided here to simplify the application process. After completing a form, please mail it to the address included on the document.

    Link to Obtaining Permits Wahington D.C.

    "You need to march. You need to demand action. You need to stop feeling unempowered and do something...Freedom is your right. Until you claim your self-confidence and know your worth, no one will give it to you. It starts with you."-LetsGo

  4. #14
    Banned Faye's Avatar
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    We could have been just lucky getting the Washington Plaza for $79. I guess the only way to get a low rate like that would be to go to "Last Minute Hotel Deals" at www.hotels.com :

    http://www.hotels.com/promotion.jsp?id=1043

    Where right now they have three other good ones listed in the low price range ( around $80)

    Bethany thanks for the info on the permit. Seems pretty straight forward. Do you want to fill that out? Or if you feel more comfortable you can list my name and address too.

    ~ Scrutiny of an election with many unanswered questions does not damage public confidence in the democracy; absence of scrutiny does. ~


  5. #15
    Senior Member Clipper's Avatar
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    Here is what I recommend:

    1) Develop key messages. These are the objectives and purpose of the march. They should be short and to the point. No more than five. These "themes" wil be carried out in everything we say and do. Think of it as a teased-out mission statement.

    2) Development and distribution of two press releases: one prior to the march and one immediately following. The first should give the basics: who, what, when, where and why. Background on SCI, too, like numbers and cure efforts. The second will say what we said and did and repeat the SCI stuff. Press releases should be distributed to key local and national media and wire services. No more than two pages in length, better if held to one.

    3) Development of media kit. This kit contains brief written materials to serve as supplementary backgrounders. Include SCI fact sheet and bios on march participants. Kit distributed with first press release.

    4) Interview. Work to secure at least one interview with key news organization. Interview would be with group spokesperson, preferably someone with SCI or a parent/child combo.

    5) Tailored press releases. Resources permitting, customize aforementioned press release to each march participant and send to media in each person's hometown. Include short bio. "Joe Smith of Anytown to march on Washington" is an appealing local story.

    I won't be able to utilize the resoures of my firm to help, or put my name on anything distributed to the media. But I can write some stuff for you guys and make everything professional.

  6. #16
    Senior Member Clipper's Avatar
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    As for hotels, I would caution everyone needing an accessible room to contact the hotel FIRST before booking with one of these online companies. All too often, my request for an accessible room has not been passed along to the hotel. I therefore try not to use those sites.

    Also, I recommend meeting at a location other than the Plaza - particularly if you intend on starting the march from there. It is a long walk - particularly for wheelchair users (15 to 20 blocks). I will put together some hotel and meeting place recommendations.

  7. #17
    Banned Faye's Avatar
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    Originally posted by Clipper:

    But I can write some stuff for you guys and make everything professional.
    Yah, thanks Clipper!

    We need to work on those key messages and a NAME for our event!

    One key message is urgency: every month there are more than 1,000 new sci. Many current sci die prematurely due to complications like CR.

    ~ Scrutiny of an election with many unanswered questions does not damage public confidence in the democracy; absence of scrutiny does. ~

  8. #18
    Wow, Clipper. Absolutely Freaking Awesome.

    "You need to march. You need to demand action. You need to stop feeling unempowered and do something...Freedom is your right. Until you claim your self-confidence and know your worth, no one will give it to you. It starts with you."-LetsGo

  9. #19
    Senior Member poonsuzanne's Avatar
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    Originally posted by Clipper:

    Here is what I recommend:

    1) Develop key messages. These are the objectives and purpose of the march. They should be short and to the point. No more than five. These "themes" wil be carried out in everything we say and do. Think of it as a teased-out mission statement.

    2) Development and distribution of two press releases: one prior to the march and one immediately following. The first should give the basics: who, what, when, where and why. Background on SCI, too, like numbers and cure efforts. The second will say what we said and did and repeat the SCI stuff. Press releases should be distributed to key local and national media and wire services. No more than two pages in length, better if held to one.

    3) Development of media kit. This kit contains brief written materials to serve as supplementary backgrounders. Include SCI fact sheet and bios on march participants. Kit distributed with first press release.

    4) Interview. Work to secure at least one interview with key news organization. Interview would be with group spokesperson, preferably someone with SCI or a parent/child combo.

    5) Tailored press releases. Resources permitting, customize aforementioned press release to each march participant and send to media in each person's hometown. Include short bio. "Joe Smith of Anytown to march on Washington" is an appealing local story.

    I won't be able to utilize the resoures of my firm to help, or put my name on anything distributed to the media. But I can write some stuff for you guys and make everything professional.
    Clipper,

    I look forward excitedly to reading the materials to be compiled by you!! Thank you so much for generously inserting your expertise in this extraordinary event.

    Regarding the Washington Plaza, the room rate for April 3rd to 6th is $174. I also called and found that only 3 rooms left on those days.

    Faye, should we start a new thread counting the participants on April 5th as you originally proposed holding the event in March?

    Suzanne

  10. #20
    Banned Faye's Avatar
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    Originally posted by Suzanne Poon:

    Faye, should we start a new thread counting the participants on April 5th as you originally proposed holding the event in March?

    Suzanne
    Suzanne, I am going to add names of those who will be joining us to a list I am starting in the Activism thread at the top of the CURE forum.

    So if the 16 people who identified themselves as "for sure", the 13 likelies, the 11 maybies and possibly some of the 11 "other month" category in the Poll titled Inventory..., please drop me an e-mail at fayeforcure@yahoo.com or PT me through CC, I will add your CC name to our list.

    Also please indicate what state you will be traveling from.

    Thanks!

    For simplicity sake we may be able to assume that the numbers for April 5th would be even better than the poll numbers for a march in March.

    ~ Scrutiny of an election with many unanswered questions does not damage public confidence in the democracy; absence of scrutiny does. ~

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