Our Voice, Our Message, Our Lives

Discussion in 'Fibromyalgia Main Forum' started by UsedtobePerkyTina, Aug 2, 2010.

  1. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    PANDORA and other non-profit organizations have joined together with a Facebook Cause page for a public awareness campaign. This will be a direct to the public campaign of ads and PSAs.

    We are working now on the first ad. Some of this is strategy, so I can't tell what the topics or angle will be.

    We have longed for someone to speak boldly in a public way about the situation that leaves us forgotten, ignored, and misunderstood. Now, it is finally happening.

    This is not about blame. This is about awareness of the circumstances and the effects they cause and what needs to be done to correct the situation.

    Go here to join and donate: http://www.causes.com/causes/511536?m=62132c92

  2. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    We're up to $700 in four days.

  3. AuntTammie

    AuntTammie New Member

    I joined rt after it started and I am really impressed with how quickly it is growing.......I wish the site had a little more info, though, about how this is actually going to work (I mean the steps in the process, how we can give input, etc)
  4. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Things are changing fast.

    I just posted some sample logos for everyone to consider and tell what they like. Please look again.

    Moving fast here.

    Sample ad is being designed now. We want more PR / News / Advertising people to join our effort.

    Please get others to donate and get them to get others to donate. And if you have any skills or experience we can benefit from, please offer.

    I have worked on contacting some support groups. But I need help with that also.

    Posting information about this on other message boards will help also.

    Remember, we know we will not agree on everything, but we feel all will see benefit because whatever is done is more than is being done now. There are so many messages to get out. So be patient. More money, more ads, more exposure, more points we can make.

  5. AuntTammie

    AuntTammie New Member

    I will look back at the site again soon.....have to get offline rt now, but I thought I'd bump this up so others see it......it has the potential to be a really important & helpful campaign
  6. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    We have two color versions up now.

  7. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I wanted to let everyone know we are up to $983.

    We are also doing some work behind the scenes, getting ad prices and contacting support groups.

    Please join and donate.

  8. skeptik2

    skeptik2 Member

    This is an important campaign, and it will delight your hearts and spirit when it all comes to
    fruition, so join in and give of at least your opinions and votes on the logo for the Cause.
    There is also a discussion board where you can say what you would like to see in the ads that will be printed in major media.

    If you are short of money, don't worry, but DO ask those of your family and Friends to join the Cause and donate as a Birthday Wish in your name, or just because it's a worthy Cause. If you have a FB page, list it as one of your Causes and give the link to it.

    I'm supporting this effort, and hope you will too!


  9. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    We have crossed the milestone and are now over $1,100.

    Look soon for a posting of FAQ and advertising rates.

    If you haven't joined or donated, you are missing out. Just imagine, if everyone donated $10, we would have $6,000 by now.


  10. skeptik2

    skeptik2 Member

    I have never had a problem donating through Causes and you receive an email listing where your donation is going, so you are sure of it's validity.

    This is going to be an amazing project, and you could be a part of it!

    I know you are trying to support the WPI also, but maybe you could give even
    a little for Our Voice, Our Message, Our Lives, too? Give only what you can,
    but if you can give more, and ask your friends and family to do so also, it
    really adds up fast, and our goals will be reached sooner. It would be
    wonderful if an ad could coincide with the NIH/FDA study on XMRV and the
    September XMRV Working Group meeting Sept 7-9, along with the next
    very important CFSAC meeting, so please see if you can join and give!

  11. AuntTammie

    AuntTammie New Member

    I think it's a really important cause, too, but I am getting very frustrated bc the discussions do not show up.....I do know how to use the cause pages, and I am not having problems with my computer.....and I have seen comments on facebook from others having similar problems....have not received any reply to the several times I brought this up, nor have I seen replies to the others who have

    when I go to discussion it either says there are no discussions....or it shows part of one and previous comments are missing as are the other discussions

    I understand that people are busy and exhausted and sick, and that this is still in its early stages, but I do know it is moving fairly quickly & it is NOT going to be "our voices" if many of us cannot actually have any say
  12. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Aunt, you are correct. I am so sorry for the frustration. It works, and then it doesn't work.

    We are looking at other options now. Also, Marly has set up a section on Discussion Board (which comes and goes) for people to post the problems. She will be addressing it with the Cause folks next week.

    As you know Facebook is wonderful in its ability to get the word out with people easily responding. But, it often has glitches, in its regular Facebook and other sections. (This has been covered in news media also)

    Since P.A.N.D.O.R.A (a 501c3)was willing to support this and had the FAcebook page which could quickly get the message to many people (600 members in four days) and we want to have something published quickly after the next research paper is released, this is the avenue we chose.

    As with everything, there is a trade off. The glitches (which were unexpected) and the fact that not everyone who wants to donate or participate is on Facebook and never will be.

    So, P.A.N.D.O.R.A. again stepped up and said they would handle donations to the cause through their website and through the mail. As P.A.N.D.O.R.A. has 9 causes, you can see the bookkeeping challenge this is. But they feel strongly this ad campaign is needed.

    We have prepared and will soon send a formal letter asking for other patient organizations to help with fund raising, expertise and other resources.

    In the mean time, when you post something on the cause page, please send it to me in e-mail also, so your opinion is included. editor@claynews.net


  13. Beatcfsfms

    Beatcfsfms New Member

    Dear Friends,

    We appreciate immensely the support that the patient community is giving to the cause above referenced. It is amazing!

    We are frustrated too that the Causes Page is not working well the way it should and we are already looking into other venues for a more stable discussion platform. Although the Causes pages is a wonderful tool as it has now other whistles and bells that for some reason is not coordinating well with Facebook. Facebook is going through a major overhaul and we believe is causing glitches on the Causes Application too.
    So now we are looking at other venues to create a site-community where folks can have a forum page. We need to do this simple and easy. There are several platforms that the cause-project can use besides Facebook and or complement what is already in place. The key will be to know the pros and cons of doing so.

    We have many forums already in place that could be part of this including this forum here on Pro-Health. We don't want to re-invent the wheel and create yet another "bureaucracy" so to speak. But because the cause is generating already such great support, we are moving fast into the 2nd phase of the cause-project. So we are already looking into creating a blog/web site that will allow interaction all in one place. To do so it will take resources in people, time, and money.

    We ask for your patience and continuing enthusiasm to get this off the ground. We are getting there indeed.

    Meanwhile, I have asked folks to type up their suggestions, comments on microsoftword or a similar software, and then cut and paste to the cause-project page discussion board pages, in case the comments do not take hold.

    As suggested by Tina Tidmore above, you can send an e-mail to her as well as
    editor@claynews.net. Thank you all for your valuable support!

    The cause-project now is 725 members strong and $1,211 has been donated so far. Please keep spreading the word. Here is the link: http://www.causes.com/causes/511536?

    Marly Silverman
  14. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    That's $1,261. Just received $60 in donations.

    If everyone would give some, whatever amount, we will get there.

  15. AuntTammie

    AuntTammie New Member

    thanks for your reply.....good to know that this is being worked on

    I would really hate for people to give up on this becasue of on-going frustrations

    I saved some of what I tried to post after having so many problems, so I will have to email it to you soon.....rt now I am having a really horrible week and am so exhausted and getting sick spending much time online, so I have to get back off the computer

    btw, it might be helpful to put a message here and on facebook saying something about this problem and the fact that it is being worked on so people don't try to go to discussion, get frustrated, and go away & give up on this

    I do realize that with the amt of donations, that does not seem to be happening, but I still think it would be good to let people know that you are trying to fix the problem

    sorry if I'm being a pest about this - I just REALLY want to see this succeed[This Message was Edited on 08/16/2010]
  16. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    We now have ad prices posted:


    Cause page is here: http://www.causes.com/causes/511536?m=f042604e

    I supposed you will have to copy and then post in your url address window.


    [This Message was Edited on 08/16/2010]
    [This Message was Edited on 08/16/2010]
  17. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    We are making progress folks.

    Name for the group is being voted on now. If you are on Facebook and would like to vote, go here: http://apps.facebook.com/causes/causes/511536/discussion_board?m=95c3dabb

    Also, we hope to have a separate website up soon.