ACF17388

May 12th Awareness Day for ME/CFS and FM

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  • Submitted by:

    May 12th

    Organization:

    National ME/FM Action Network

    Location:

    Ottawa, Ontario

  • Idea Created:

    September 26, 2013

    Budget:

    Medium ($50K - 100K)

    Community Size:

    More than 1,000

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Overview:

Our dream begins with awareness. May 12th Awareness Day is a chance for the 750,000 people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) to be seen and heard! These illnesses are real; the people are real; and they need help NOW!  

ME/CFS and FM are chronic and severely disabling illnesses. They are as disabling as MS and are more prevalent in Canada than breast cancer, MS and AIDS combined! People are frequently bedridden and become isolated from friends and family – invisible in their own communities.  

Dr Nancy Klimas, an expert in both ME/CFS and AIDS, was quoted as saying "A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS. If I had to choose between the two illnesses I would rather have H.I.V. "

These illnesses do not discriminate. All races, men and women, rich and poor, adults and children can be afflicted. It is devastating when a child is forced to cope with such a disabling illness. They frequently end up having to drop out of school and are unable to complete their education.

We are on a mission to bring awareness in Canada for this community of people living with these illnesses and to set the stage for fundraising for research and more physician education.   To date our volunteer efforts have been handcuffed as not only is our community very disabled, many are in financial distress. The illness limits our ability to raise the substantial amounts required to mount a large scale awareness event and to fund the desperately needed research. It is the dream of our community to erase stigma and finally be taken seriously by friends, family, researchers, government and those in our local communities.  

This contest gives us a chance to fund a nation wide awareness campaign for 2014, the 22nd Anniversary of May 12th Awareness Day.  It will also define Canada as a world leader in raising awareness as this day is also an international event. It will not only benefit 750,000 Canadians, but it will indirectly benefit the 20 million people that suffer worldwide.  

We will use the funds to hold events in as many communities across Canada as possible which will lay the foundation for a strong network of organizations in Canada and future fund raising for education and research.  We’ll connect with every MP and provincial/territorial representative in Canada and have May 12th proclaimed in cities nationwide. We’ll sport t-shirts, carry signs and have engaging speakers in as many communities as possible. Each event will have its own venue but will share elements common to all. In order to unite the larger community across Canada we’ll also advertise in national and local papers, and, if funding permits, on TV and radio. As education is so critical, we will also target physicians, medical students and other health professionals with our letters and/or advertising.  Brochures and banners are planned.  

We believe with awareness, will come action! Our community is desperately in need of treatment facilities and funding is required to support research and our scientists.  A successful May 12th will bring many rewards for years to come. These activities will not only benefit us today, but they will be an investment in our future.  

Aviva’s gift will help to unite our national and local communities and make a difference to the lives of many Canadians. It will give us credibility in our quest for treatment and a cure and hope for a better tomorrow.  

To quote Helen Keller – “Alone we can do so little; together we can do so much.”




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