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Major Public Media Campaign Launched - This WILL Get the Attention of MILLIONS!

Discussion in 'Action Alerts and Advocacy' started by muffin, Aug 12, 2010.

  1. muffin

    muffin Senior Member

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    USA!
    SIX Advertisement Samples for the Washington Post AD -Review & Comment by 31 Oct!

    Samples Ready for Feedback

    The ad samples are ready for your review. Please go here: http://mcwpa.org/?p=166

    Go here to give your feedback: http://www.forum.mcwpa.org/viewforum....

    Look under "Print Advertisements" and then look for "Ad Samples."

    If you have not registered, you will need to do so. After registering, you may have to enter another password: "action" to access the topics.

    Feedback time will end on October 31 at midnight EST.

    Don't forget to donate here: http://www.causes.com/causes/511536?m...

    Look at the top left for the donate button.

    The MCWPA Team
  2. muffin

    muffin Senior Member

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    Please post your ad comments on the www.mcwpa.org forum not here

    Please post your ad comments on the www.mcwpa.org forum not here http://forum.mcwpa.org/index.php

    You can register for access to the site and then hit the forum "Print Advertisements-
    Ideas and feedback"
    Password: action

    You can chat about your ideas on the ADs here if you like but if you want the Advisors to read your comments and take them into consideration for changes then you must go to the forum site shown above. We have gotten quite a bit of comments and they are really insightful, thoughtful, and helpful. So please keep looking and adding. You have until 31 Oct to respond!

    We want your ideas and comments so that the ADs are even better with more eyes and brains looking at them. So please go there and not here to give us your input. Voting is also on the website/forum as well. Thanks! The MCWPA Team :thumbsup:
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Just to give you update:

    Marly Silverman, with PANDORA, who has been handling relations with patient organizations, reports she has commitments from three other patient organizations to have their logo added to the advertisements. They are:
    Vermont CFIDS Association http://www.vtcfids.org/
    Wisconsin ME/CFS Association http://www.wicfs-me.org/
    Rocky Mountain CFIDS Association http://www.rmcfa.org/index.html

    If you support this ad campaign, please show your support for these organizations also. The ad will contain five logos: MCWPA, PANDORA and the ones above. The MCWPA website address will be included. This will show we are uniting in our message. We plan to provide these organizations a list of the media talking points.

    Media Relations - Speaking of that, Sita is working on getting media talking points, forming a press release and preparing to send out the press release. The press release message will complement the ad, explaining why this group is doing it. Basically, the message is that patients will not be silent any more. We are taking our message to the public because it is a public health concern. It will include many other patient activist activities this year, including those in UK. Sita would love to have more help her. Particularly, she is asking for administrative help. Go here to discuss the issues: http://forum.mcwpa.org/ You may have to register. Then when you want to see the topics, you may have to enter the word "action". Also, feel free to contact Sita directly. You will see she is an administrator on our Facebook Cause page. http://www.causes.com/causes/511536?m...

    Website - Andrea is working on adding content to the website. We still have an issue with AT&T. We have been on the phone with them almost daily. We will keep you posted.

    Fund Raising - Karen is working on getting the MCWPA logo on products that you can purchase. A percentage will go to MCWPA. Look for a bulletin soon where you can help decide through a vote what products should be included. Karen also would love to have more helping her. Go here: http://forum.mcwpa.org/ and you will see a topic for fund raising. Also, she has posted on the Facebook Cause page. Her name is: Karen Mascuch Ravitz. Feel free to contact her directly. Don't forget, we got this far by donations. With more donations, we can do more. Go here to donate: http://www.causes.com/causes/511536?m...

    Ad design - The designers made refinements after receiving the patient feedback. Many commented that they were impressed with the insight the patient feedback showed. A report was sent to each designer showing every suggestion given. Today or tomorrow we will be contacting Washington Post for their committee review to see if these are eligible for charity rate. If changes must be made to get charity rate, we will have to make them. We are getting big discount because of getting charity rate. Overall, we were told charities can educate. We were assured we can give a strong message with that rate, but sometimes it has to be worded in a different way. The newspaper will advise us of what changes have to be made to get that rate, if any.

    We are making history.

    MCWPA Team
  4. muffin

    muffin Senior Member

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    USA!
    Matching Donations for Our First-Ever Widely Circulated Press Release - MCWPA

    Matching Donations for Our First-Ever Widely Circulated Press Release - The ME/CFS Worldwide Patient Alliance (MCWPA)

    We have an Angel donor willing to match donations up to $l,000 for us to be able to send a press release to all major media outlets and reporters in the U.S. and U.K. This is timed to go out on the same day as the ad, to bring attention to the ad, the cause and the illness. The American media is our main target because international media will usually follow them, but we'd like to include the U.K. media since patients need so much help there.

    The cost for this wire service is $1,130. That's our goal. If we raise more than this we can also target other media around the world. By the way, in using this service we are also buying a special Washington, D.C.-based list to help ensure coverage there.

    Our MCWPA ad is a first - never has a patient group raised this much money or advertised in a major daily newspaper! Getting our press release into the hands of all major media in the U.S. and U.K. would also be a first! Please help us reach this goal. Remember, the ad is only half our program; public relations is the other half. Tina will be updating you shortly on the ad.

    Any donations, large or small are so appreciated! Thank you all for making this happen.

    Websites for learning about this major worldwide media campaign, joining as a member, or donating to the Cause can be found at the following links: http://www.causes.com/causes/511536?m=f042604e and http://www.mcwpa.org/

    Thank You -- The ME/CFS Worldwide Patient Alliance (MCWPA) Team
  5. Tuha

    Tuha Senior Member

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    Great that the things are moving. I think that after U.S. and U.K. media we could include also Brussels media. If we would get attention of EU it means the attention of 27 countries with more than 500 millions habitants and its another strong economical area. EU often make the decisions together. So if we get Brussel on our side - Brussel could make presure on U.K..........
  6. muffin

    muffin Senior Member

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    Just saw the idea of Brussels on Facebook

    It's a great idea too. But we need money! Always the money issue.

    We all are pushing and working super hard to get things just right for when the AD hits the POST. The last piece is the Press Release and that would really hit our message(s) out into the entire world and not just the US.

    We are really working hard to get the money so that we can hit places like Brussels as it is super important and the EU is indeed part of the whole huge picture.

    Thanks for that idea - we will try!!!
  7. muffin

    muffin Senior Member

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    Yes, going to the well again. We got several nice donations on the first day of our "Matching Donations" for the critical Press Release and that's great.
    We need more though in order to get into the UK and really hit the media and journalists there. Many of us understand that the Weasel is in control of the medical information in the UK but I doubt he can control the info sent to the media and journalists and then what THEY will do with that information.
    From what I understand, our British friends are going to have to do a run-around on the Weasel to get this info on ME/CFS and the newly discovered Retrovirus family out to the media and then to the public where it rightfully belongs. Hence the Press Release that HE and his band of sociopaths can not control or interfere with.

    Please help the MCWPA bust its way into the UK and finally get the real medical information out to everyone, including the public, doctors, researchers and policy makers. Emailing the House of Lords isn't going to do it. But getting the media to look into the very strange issue of a document that is locked down in the UK Archives for 83 years WILL cause a ruckus and start the journalists to go looking for the dirt that the Weasel and his sociopath buddies have been throwing on top of the ME sick for years now. Please help us get to the UK Media and entice them to do the investigations into ME and this Retrovirus family that may be the cause of ME/CFS/FM and many other diseases and cancers. Hit the links in my sig line to get to our Facebook Causes site and the website. Thank you - MCWPA Team
  8. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Pediatric cases needed. On behalf of our PR spokesperson, I am asking if anyone can get us to a parent of a child (or teen) with ME/CFS. One of the ads says, "Will you or your child be next." So, when news media calls, after national, possible international press release, we will need to be able to refer them to a pediatric case. Please, e-mail me at editor@claynews.net.

    Thanks

    Tina
    MCWPA Team
  9. muffin

    muffin Senior Member

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    Voting on ads within 48 hours – ME/CFS -- Posted on Sunday 21 November at 3:30pm

    http://apps.facebook.com/causes/posts/590436?m=9ac39973

    After getting feedback from Washington Post on how we can say our message and still get the cheaper charity rate, three ads have been submitted for final vote. We are waiting on one more. We expect to be able to present these to the patient community for a vote within the next 48 hours. We are also waiting for the website change in servers to be complete, which should be by Monday evening.

    A poll of some of the advisors working behind the scenes has determined that seven days is a good time to allow for patient voting.

    We have two websites as backups if the mcwpa.org hosting server changes are not complete.

    We will show pdfs and then will direct you to a survey where you will choose your favorite.

    On another note, Sita and others are working now to fine-tune the press release. They are asking for more donations so that they can get the press release to more news wire agencies. They want US, UK and Brussels, which we have been told will get us into much of the rest of Europe. Reminder, the first $1,000 donated to this part of the campaign will be matched. Donate here: http://apps.facebook.com/causes/?m=ed...

    Referrals. We have a list of people we plan to refer news media to when they call. This last week, we have been contacting these individuals to ask if we can have a short-notice phone number and e-mail address. We include some who can tell the history, clinicians, researchers, pediatric cases, patients (including men), experts and patients that can show it is fatal, oversees patients. So, we welcome any patient offering to do news media interviews. You will have to be ok with name (full), face, illness story being public. You will have to tell us your short-notice phone number, e-mail address and what city and state you live in, or what country you live in.

    After website server change is complete, we will be adding more content to the website.

    The "Time for Action" team, Bob and Charlotte, are working to take this ad and turn it into direct political pressure. The ads will be designed to get a news reporter to do a story which then puts pressure on politicians. It makes them accountable to the public at large. But, a more direct approach will be included. This may include e-mails, mailing copies of the ad to congressmen or other efforts. This is in discussion now. We hope to bring you more info on this soon.

    Karen is working on getting products with the ME/CFS logo and a slogan. She is looking at setting up a store account through Zazzle. Look for more information on this soon.

    Tina
    MCWPA Team

    http://apps.facebook.com/causes/posts/590436?m=9ac39973
  10. Roy S

    Roy S former DC ME/CFS lobbyist

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    It's always a good idea to send any articles on CFS to your Senators and Congressman. If the voters are reading about it they will want to be up on it.

    I'm looking forward to seeing the effects of this. The Washington Post is the place I'd most like to see it. Washington is a very literate town and influential people pay close attention to that newspaper.

    When I was living there and lobbying for us, reading it was the first thing I did almost every day. And sometimes about the only thing I did.

    I'm wondering about the timing of the ad. Was there something about the paper choosing the date within a two-week period? I think a Tuesday or Wednesday when Congress is in session and the elected people and their minions are most likely in town would be best. That may not be possible, but I think the WP owes us that for not covering the story well over the years.

    And for placement, above the fold on page 1 would be nice...
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    So the Washington Post is more influential than Washington Times?

    GG
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    As part of our discussion of advisors, we looked at which newspapers are widely distributed, is known as place for serious / fourth estate type news, and is often quoted by other news media.

    USA Today is more widely distributed. But, it is not known as place for serious / fourth estate type news and is not often quoted in other news media.
    The New York Times is very widely distributed and is serious / fourth estate type news and is quoted by other news media. But, it was three times as expensive as the next one.
    Washington Post is distributed in Washington mostly, but it gets to government people and to reporters who report on government. Is known for serious / fourth estate news and is often quoted in other news media. Many other newspapers and international news media have bureaus in Washington. And they all will read WP to get story ideas. Plus, with the charity rate and that we let them choose what day, we got a 1/2 page in the main section for thousands of dollars less.

    Although it is not as available at local news stands, we are trying to work out something with WP that will allow patients to more easily get a copy.

    Tina
  13. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Thank you for participating in the voting. We will be announcing the winning ad 24 hours prior to publication.

    Tina
    MCWPA Team
  14. Chris

    Chris Senior Member

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    Victoria, BC
    Tina, and all others who worked on this--a great project on behalf of us all! Many, many thanks! Hope it has not precipitated the mother of all crashes for you. Best wishes, Chris
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    thanks, you know, up and down, good days and bad days.

    Some of us have fallen from illness, but the rest move forward. Then when that person returns, we welcome them back. At times, I have been overwhelmed by the pressure, so that I have to reduce my role for a few days. Someone else steps up to relieve me. Then, I gradually gain strength again and can handle more. Some in another area says they have too much and their helpers are too sick, not responding to e-mails. I step in to help or I get another person to help. Keeping it organized to make progress while helping each other out, getting input and making sure we keep it democratic has been a great challenge, but we are doing it.

    I want to say, one of the major reasons for success is that there isn't an ounce of ego among us. We respect each other. We give trust until proven otherwise. And we know how to yield to majority or to a person who is handling a certain responsibility. We keep the big picture in mind. We don't sweat the small stuff. Also, we forgive.

    We spend time getting input on an issue, and then we decide (major decisions by patients voting) and then we move forward and don't revisit the issue. If we kept going back to see how to do better, for days and weeks and months, we wouldn't make progress. There is always a way to make it better, but at some point, the making it better comes down to just difference in opinion and insignificant things.

    Grass roots.

    Rockin and rollin, look for more announcements soon.

    Tina
    MCWPA Team
  16. KC22

    KC22 Senior Member

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    Tina,

    All I can say is GREAT JOB!!! to you and to all who have made this happen. You are all to be commended and big thank you for all of your hard work!!!!!
  17. Recovery Soon

    Recovery Soon Senior Member

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    Sounds like a group of depressed/unstable hypochondriacs at work. ;)
  18. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Yes, thank you to all!!:victory:
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Can't speak for the others, but depressed, I'm not.
    Hypochondriac, definitely not.

    Unstable, that's debatable.

    tina
  20. helen41

    helen41 Senior Member

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    This is such a wonderful post. I actually printed it out so I could read it as needed. I have visions of Whackamoles. You pop up, then retreat again when you must and another pops up somewhere else. Thankyou Tina

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