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Dear NFA Friends:
I’ll never forget the day in September 1997 when I got the call that said, the “National Fibromyalgia Awareness Campaign” had been chosen to become a project of an incubator program, which would allow us to serve the fibromyalgia community as a non-profit organization.
Within a short amount of time we had decided to re-name ourselves the “National Fibromyalgia Association” (NFA) and we had been granted our own independent non-profit status! Although the NFA’s operations started on a card table in my family room, over time we became the largest and most influential NPO representing people with fibromyalgia in the world. Karen Lee Richards, my co-founder and myself, along with a group of dedicated women with FM worked as much as our painful muscles and joints would allow us and met regularly to plan conferences, write letters to the media, prepare a newsletter and answer thousands of letters and phone calls from others with FM who were desperate for information.
Over the next fourteen years the NFA evolved in its ability to help people with fibromyalgia and spread awareness about the life altering effects of this stigmatized and often discounted illness. Having spent over two years in bed and seeking help from doctor, after doctor, which resulted in no real treatment recommendation or hope for finding relief in the future…I found that one of the best pain reduction methods for me was to concentrate on the NFA and to put my focus on creating ways to help and support the FM community.
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NFA’s Juvenile Fibromyalgia Ambassador , Emma Taylor,
“Makes Fibromyalgia VISIBLE”
West Seneca West High School honored for helping student with Fibromyalgia Friday September 5, 2014
Article By Kimberly Snickles, West Seneca Sun Editor:
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The National Fibromyalgia Associations Juvenile Ambassador
News from NFA Board
(Michael A. Seffenger, DO, FAAFP)
Welcome to the summer of 2014
As many of you know, the National Fibromyalgia Association surpassed 150,000 followers this August 2014 on our Facebook page. In fact, since that momentous figure was reached we continue to gain fans! This amazing momentum is indicative of your engagement and extraordinary support and we humbly thank you. It’s wonderful to see your continued passion, especially as the NFA, recognized by many as the premier fibromyalgia organization in the world, is about to enter a new phase of its service to the fibromyalgia community. But first, a reminder of how far we’ve come and our accomplishments over these last 17 years.
For those of you who don’t know, it all started in Lynne Kennedy Matallana’s living room. Having been diagnosed with fibromyalgia after years of misdiagnoses and seeing 37 doctors (we know many of you have similar stories), she took matters into her own hands and started the NFA, a [501 (c) 3] non-profit organization with the mission to raise awareness about the often unrecognized condition. And, while there is still much to be done, to a large degree she accomplished that goal as fibromyalgia has become better accepted and understood because of the NFA’s work. With her leadership, vision and incredible energy she built the NFA into an internationally recognized association that, at its height, had 25+ employees and multiple programs (Leader’s Against Pain, Fibromyalgia Awareness Day, Pledge to Care, FAME Conferences, Walk of FAME, Make Fibromyalgia Visible, and so on…) that provided help for people overcoming pain, their families and healthcare professionals.
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