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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. Mya Symons

    Mya Symons Mya Symons

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    I think I donated to the wrong place. I pressed the donate button and donated $10.00 to Pandora. How do I donate specifically to the advertising campaign?
  2. Mya Symons

    Mya Symons Mya Symons

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    awol, I tried to join your forum so I could donate there, but I never received a confirmatin e-mail after I signed up. I looked in my junk mail in case it got filtered out, but it never came. Any suggestions?
  3. awol

    awol *****

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    It seems a few people may be having a problem with this. If anyone else does, but wants to join, please get in touch with any of us who are forum members there. V99 or garcia are probably the ones who are here most often and most likely to get your message.


    How's the fundraising going muffin and tina? Great project here!
  4. maryb

    maryb iherb code TAK122

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    Any idea when the direct paypal link will be up for this campaign?
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

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    If you donate through PANDORA and include the campaign name in the description window, it will get there. I spoke to Marly this morning and she has received donations. She will correspond with these individuals by e-mail to make sure of where they want it to go. So don't worry, it will get to the right place. Marly is experienced with this as she has many causes and has been keeping them separate.

    Also, she mentioned to me that she found out you do not have to be a Facebook member to donate through the Facebook Cause page. She will soon be changing the FAQ to tell how that can be done.

    In the mean time, I have posted ad prices:http://www.facebook.com/board.php?u...=512#!/topic.php?uid=5004684872608&topic=1527

    Tina
  6. maryb

    maryb iherb code TAK122

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    Thanks Tina will do.
  7. muffin

    muffin Senior Member

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    USA!
    http://www.causes.com/causes/511536?m=f042604e

    As many of you have read, the WPI is getting closer to having real immune typing done. They have made huge inroads into CFIDS. The PNAS study will be out in/around September and so that means that this Advert must also be out at around the same time to capture this critical moment and get the entire Washington DC establishment informed and involved. This advert is critical in targetting those that must have this information including the policy makers, Congress, the Federal agencies, and everyone involved with funding and research for a probably deadly retrovirus.

    Please join and donate. These guys must have the money to pay the Washington Post so that this advert hits at around the time that the PNAS study comes out - for greatest bang and exposure.
    Now is the time folks - NOW. Thanks to all who have joined and donated. Trust me, if it is in the Post then it gets attention from all types of people and organizations.
  8. Frank

    Frank Senior Member

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    Gave $10 and will be administrator on the cause. Will donate more in the comming month.
  9. muffin

    muffin Senior Member

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    USA!
    Dankje, Merci, Danke, and a very big Thank you!!!
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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  11. muffin

    muffin Senior Member

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    Donations are badly needed to get this critical initiative done now!! Please!

    Guys: Yet again, do NOT assume that when the FDA study hits PNAS that miracles will occur and funding and research will surge. It does NOT work that way! The fiscal year is begining in Washington and you can NOT simply move money from one are to another. It does not work that way.

    Just because WE all understand how critical the PNAS/FDA study is and what it means to US, does not mean that the rest of the world will understand the enormous significance of what has been researched, verified and published. WE must be the ones to get the layperson info out into the public and out to the Federal government employess - all of them and esp. the ones involved in CFIDS and XMRV funding/research. We must educate the SSA so that they can do what is right by us. That means hitting the Washington Post.

    We must have that Advert in the Washington Post or the PNAS article, the work done by WPI/NCI/CC and NIH/FDA will be for nothing. Only those of us affected will "get it" - not the rest of the world or the policy makers, funders, researchers, etc. Understand the implications of not getting the word out?

    Any amount of money will help get to the goal of getting that 1/2 page advert in the Post. Please, donate anything you can. NOW is the time. An authority on getting the publicity on published works says that you have about a month after a heavy duty publication is out to really make a splash. We are coming upon the PNAS release very quickly and MUST have that money for the advert. That advert MUST hit within the month after the PNAS release or all is lost.

    Again, remember that the money you give for this media campaign will bring in far and away more money for WPI research than if you gave the same amount directly to WPI. This advert will bring HUGE amounts of attention to WPI and all that they have done and are now doing. WE know what they have done but the rest of the world does not. And this is a huge waste.

    DONATE PLEASE! http://www.causes.com/causes/511536?m=f042604e
  12. muffin

    muffin Senior Member

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    Thank you to those that have donated!!! NOW PLEASE SPREAD THE WORD TO OTHER SITES!!

    We have a wonderful person on this forum who just donated and did other things that are very helpful. I appreciate her efforts very much.

    Please, donate or we can NOT get the message out on CFIDS and XMRV. It will be major news that is dead in the water even after it hits PNAS. The work done by FDA/NIH/CC/NCI/WPI and others will be lost and forgotten and then damaged by the CDC.

    Please. do not let this happen. Donate anything you can to this massive and critical media campaign.
    Also, please spread the word to the other websites, blogs, etc. that you encounter on CFIDS, XMRV, FM and other autoimmune disorders. Please use the link to the facebook page for now: http://www.causes.com/causes/511536

    One quick message on this campaign is below. A lot of info on this is located on the facebook page by the Admins and that is good info as well. Might make note of that as well. Pleae help get this message out and also donate!!!! Thank you - Muffin.
    ==================================================
    MAJOR NATIONAL MEDIA CAMPAIGN FOR CFS. HITTING THE WASHINGTON POST!!!!!!

    WANT ATTENTION, FUNDING AND REAL RESEARCH FOR ME/CFS?
    MAJOR MEDIA CAMPAIGN LAUNCHED!

    Please see the Facebook page located at: http://www.causes.com/causes/511536

    A group of ME / CFS patients and patient advocacy organizations are forming a patient-driven advertising campaign to address problems in medical care and access to social services. This will be a bold, yet responsible campaign calling for a change. We already have other organizations that have shown interest in signing the advertisements, as a joint message.

    As you may know, XMRV news is an opportunity for us to take ME/CFS into the public consciousness. We want to capitalize on this new discovery to create change. We will carefully frame the message to not inflame fear but to create awareness of the problems people with our illness face.

    Recent changes in policies at some government agencies, we feel, will create a no-win situation for patients filing for disability and does not take into considering much of the research that has been established with our illness in the past 20 years.

    If you want more details on the situation that prompted this, either read the Facebook page or let me know. Contacts for this critical campaign are provided on the Facebook page in the Administrators section.

    We ask that you take a look at the project and see if you can lend your support. Please consider helping us in the following ways:

    Donate
    Get others associated with your group to donate
    Get friends and family to donate
    Offer your skills, time, energy or resources
    Please go to: http://www.causes.com/causes/511536

    You will notice that in a little over a week we have raised over $1,200 and membership is over the 750 mark. These numbers show that this initiative is what the ME/CFS people believe is needed NOW at the most critical point in our diseases history.

    If you would like to donate but not through Facebook, then you can do so through the PayPal link at PANDORA's site http://www.pandoranet.info/ The PayPal link is at the top left of the home page. All donations made through the PANDORA PayPal link will funnel money straight through to this campaign. The PANDORA site already has the infrastructure in place including the PayPal account. When using the PayPal account on the PANDORA site, please ensure that you put "Our Voice, Our Message, Our Lives" in the description. This ensures that donations go to this media campaign. The hardworking folks running this Campaign are getting the Paypal link fixed on their Facebook site, but until that point, please use the PANDORA PayPal link.

    Be sure and enter "Our Voice, Our Message, Our Lives" in the Description to make sure the money will go to this campaign. We welcome other organizations setting up their own donation fund for this campaign. Contact our Administers for transferring donations to this media campaign. Thank you!!
  13. bakercape

    bakercape Senior Member

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    I'm a little

    worried that if ads are put in the paper and the name of the virus is quickly changed it could cause confusion. Although I don't know what anyone could do about that at this point in time since it is not a done deal yet.
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    baker, up to this point, it has been XMRV in all research papers. The idea of a new name is just a suggestion now. We will have to be very fluid on this campaign. And that is the beauty of it. We, as patients, can have a voice and be heard on the latest news. While up to this point, the debate and discussion has involved government agencies, researchers and leaders of patient organizations. Since decisions in this campaign are being made by votes of patients, it is your voice that will be heard. And, finally, the public will also be invited into the debate.

    Back to the point at hand. In my opinion, the best we can do is use terms common at the time, instead of what might happen in the future.

    Tina
  15. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Muffin, you wrote this:

    Any amount of money will help get to the goal of getting that 1/2 page advert in the Post. Please, donate anything you can. NOW is the time. An authority on getting the publicity on published works says that you have about a month after a heavy duty publication is out to really make a splash. We are coming upon the PNAS release very quickly and MUST have that money for the advert. That advert MUST hit within the month after the PNAS release or all is lost.

    I thought I saw someplace that 1200 was raised? How much is needed?

    GG
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    For 1/2 page ad in Washington Post with charity rate is $8,500. We have over $1,600.

    And, although we do want to time the first ad with news events, we also think other opportunities will be available. We also think that even without XMRV news, it is long overdue for patient voices to be heard in a public awareness campaign. In fact, we are now putting things in place to do PSAs after the first ad.

    Tina
  17. muffin

    muffin Senior Member

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    Open discussions for logo, message, etc. - they are asking for ideas from members.

    http://apps.facebook.com/causes/causes/511536/discussion_board?fbapp_ec=751
    Our Voice, Our Message, Our Lives (ME/CFS Awareness Campaign) Discussion Board Displaying 10 of 11 discussion topics. Start New Topic | See All Main Message 46 posts. Updated 15 seconds ago. Renaming "Our Voice, Our Message, Our Lives" 9 posts. Updated 3 minutes ago. What everyone is doing 11 posts. Updated 18 minutes ago. Name of group 57 posts. Updated about an hour ago. Letter to WPI 7 posts. Updated 2 hours ago. Ad prices 5 posts. Updated 2 hours ago. Problems with the Causes Pages- Please report them here 5 posts. Updated 7 hours ago. FUNDS RAISED FOR THIS CAUSE by PAY-PAL & OTHER VENUES 1 post. Updated 9 hours ago. What Would You Like to See in the Ads? 15 posts. Updated on August 16, 2010 at 6:59pm. Frequently Asked Questions 12 posts. Updated on August 15, 2010 at 4:19pm.
  18. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Ouch, is this with a discount? Why was the Washington Post the best to advertise with? Instead of NYT or LA Times etc..Did I miss this discussion somewhere?

    Thanks!

    GG

    PS I believe all these papers are bleeding subscribers?!

    How about the National Enquirer, they had the Jon Edwards story right about 1 year before the Mainstream media. I am not joking either! I do love the Bat boy stories though, LMAO.
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

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    gingues, hey, National Enquirer. You make a good point. But, I doubt it will pass through the advisor filter and the patients. You guys are cracking me up tonight. Thank you. Today was a bad day healthwise.

    You are right, the National Enquirer did break the story of Edwards. And although their paying sources is considered unethical by other newspapers, you have to say they got results where other news media failed, that time. This is why freedom of the press is so important. The people and the market place should make the decision on standards they require of their information sources.

    But I digress......

    We considered USA Today, NYT, WSJ and Washington Post.

    USA Today is much more available than the others. But you rarely see USA Today quoted in other news media. They seem to have more lifestyle, more flash and more sports. So it doesn't seem to target the movers and shakers. We might do good with them if we had a more informational message about the illness. But many have told me, and I have found in my past years of newspaper experience, that if you have that type of message, you will do better on running ads in smaller market papers (community papers) than a national one. Its cheaper and people read community newspapers more.

    As for Wall Street Journal, it is financial and business newspaper. While it has other parts, the target readers are Wall Street, financial folks, etc. Those are movers and shakers in business world, but not in government policy.

    This leaves NYT and Washington Post. Both of these are commonly quoted by other news media. The advantage to NYT is that it is more available across the nation. So patients can go pick up a copy and see someone speaking for them. This is important to me. NYT calls itself the national newspaper of record. This means they fulfill a "fourth estate" roll in holding government accountable and recording the history of the nation.

    Washington Post, though, was much cheaper, if we get a charity rate (this will depend on the message). And it is also often quoted in other news media. It's distribution is less in numbers. But it is also keeping watch particularly on Washington, not nation as a whole. So while circulation numbers are smaller and it isn't widely distributed across nation, it does go straight to those we want to target. Also, Washington reporters often look in the Washington Post to get story ideas. (Just between you and me and the lamp post, tee hee, T.V news media reads newspapers to get story ideas.) So if we want to reach reporters that report on Washington, then that is the place.

    A final decision has not been made. The patients who have joined the cause will decide at that time.

    We have ad price information on the cause page on the Discussion Board on the bottom right of the home page, see the link. Please feel free to see the details and give your input.

    Tina
  20. muffin

    muffin Senior Member

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    Please join and donate now. We must take this study and translate it into layperson language or the public will NOT understand or even know about this finding. We will be the only ones to know about it.
    JOIN AND DONATE - WE MUST GET THE MESSAGE OUT TO THE PUBLIC, POLICY MAKERS, RESEARCHERS, PHARMAS, and so on....


    http://www.causes.com/causes/511536

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