Discussion in 'Fibromyalgia Main Forum' started by cerise, May 12, 2009.

  1. cerise

    cerise New Member

    I was really surprised to find out just how many folks did not even know it was International Awareness Day May 12th. This was started in 1993 and is now internationally recognized! At one point in time, we even had dark blue ribbons to distribute and wear to show signs of support and awareness. There's a website callled BRAME (Blue Ribbon for the Awareness of ME).

    I am glad I was able to make a few people "aware" of this date, however, it is sad to realize that a once important and powerful advocacy movement has begun to die out.

    Yes, I was late in getting this posted. But if you will notice, the last time I posted about Awareness Day was in 2007! Each year it has been my goal to do something active and noteworthy to get Awareness Day the recognition it deserves and needs. Every year, I am able to do less and less. I was lucky I was able to do what I did yesterday!

    I am happy to say that my post was also redistributed by listserver co-cure. For those of you not familiar with the site, I highly recommend signing up for their e-mails for the most up-to-date news regarding research, advocacy and medical studies ongoing throughout the world.

    Now that you are aware of May 12, let's do the best and most that we can starting NOW for next year, May 12, 2010. What can you do? If you explore the web, especially Canadian websites you will see how May 12th is recognized locally, regionally and nationally. Send letters to your mayor, city council, state represenatives, and congress to have them issue a "proclamation" recognizing May 12 as International Awareness Day for CIND (Chronic Immunolgical & Neurological Diseases).

    If you check out calendars and e-cards on the internet, often you will see that each day is designated as National something-or-other (i.e. National Pickle Day, Sweetes Day, etc). Write to this folks and get them to put "International Awareness Day for CIND" on their calendars and websites! Check out

    Last but not least, use your imagination. MAKE PEOPLE AWARE!!!
    You will be amazed at how much you can learn from checking out the websites for support groups throughout the country. Some websites to check out:

    National CFIDS Foundation
    Nightingale Research Foundation
    National ME/FM Action Network
    RESCIND, Inc

    RESCIND (Repeal Existing Stereotypes about Chronic Immunoligical & Neurological Diseases) is the website started by Tom Hennessy, founder of May 12 International Awareness Day.

    Arise, go forth and conquor -- that is, if you can!!!!

    PLEASE, carry on where others have left off. That is the curse of our disease, we can't even advocate for ourselves because we are too tired, too weak, too ill and too broke! Do what you can, while you can.
  2. AuntTammie

    AuntTammie New Member

    I'm glad that you posted about this, and I hope that you know that what I wrote in your other post re: awareness day was not meant as a criticism at all....just a response to the person who was sad that people had not responded yet (when there had been very little time to do so)....even if it's posted kind of late, it's still good to get the word out, and it's always good to try to spread awareness, esp on the day but other times, too
  3. cerise

    cerise New Member

    Thanks so much for your response and support. I am so sad to learn that so many people didn't even know about Awareness Day and that the info is out there but people don't know about it. It is so discouraging to me that the same problems and concerns that I experienced 20 years ago are the same ones I read about on this board. The advocacy folks don't agree with me. Folks that have been sick 20 plus years do agree. I guess that says something!!!
  4. AuntTammie

    AuntTammie New Member

    I have been sick for about 5 yrs and I am discouraged and fed up with the response of the supposed advocacy people, Drs, researchers, the general population, I can only imagine how hard it must be after 20 years....I am glad that you are still trying to spread the word, though
  5. simpsons

    simpsons Member

    i just thought i d bump this post as brame a uk charity sells the blue ribbons for me

    there are some good posters around and if those who are well enough to could sell these ribbons hand out an information leaflet then this would raise funds for research and raise awareness at the same time.

    just that we need to start thinking of idea s to raise awareness in may

    rather than have just one day it is now going to be a month

    perhaps any local groups could take it in turns to do an hour or half an hour each, or maybe cover lunch times

    if anyone was brave enough they could write to tv shows and offer to be interviewed

    the invest in me book lost voices would be a good book to have to hand and perhaps if funds could stretch one or two pages could be copied and blown up as posters to have as a display

    just a few idea' to throw in the mix.

    love to hear any other ideas others have, just you know that we have to start planning ahead