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for the official NFA website.The NFA is committed to efforts that will increase FM awareness and improve treatment options for people with Fibromyalgia. With teamwork and dedication, the NFA will continue to grow into a key organization helping people with FM everywhere.
In 1997, Lynne Matallana and Karen Lee Richards, met over the Internet and together established the principles and goals for what soon became the first Fibromyalgia organization to focus on promoting FM awareness through the media. They founded the NFA in April 1997, and in September of that year, the NFA sponsored its first major event, "Route 66, Biking for Fibromyalgia Awareness." Triathlete, Christopher Huybrechts of Geneva, Switzerland biked 1200 miles from Chicago to Los Angeles, across 8 states, along historic Route 66. This effort was designed to bring national and worldwide attention to the chronic illness called Fibromyalgia.
The results were extraordinary: TV, radio, and newspaper coverage (including eight front-page articles) in six US states and four countries. The NFA, born out of compassion and a desire to improve the quality of life for people with FM, was well on its way to becoming an integral part of the FM community.
Programs
Over the past four years, the NFA has accomplished a great deal and continues to carry out a wide array of programs to meet their mission:
- An ongoing media presence insuring coverage of Fibromyalgia and related topics on TV (Dateline, January 2000), radio (FM Public Service Announcements), magazines, and newspapers. The NFA provides press releases, updated and credible source materials to encourage and assist journalists, and the development of a media library to track misinformation and promote accurate information.
- Assistance to local support groups, providing them with FM information (thousands of handouts and posters for health fairs and community events), national contacts and referrals, and assistance with establishing and maintaining support groups.
- Patient information and education through international conferences (FAME 2000-Los Angeles and 2001-Chicago), regional seminars, brochures, informational handouts, video and audio tapes, newsletters, and a website. Telephone assistance and online advice gives patients one-on-one help.
- Fibromyalgia Aware Magazine. After May 1, 2002, this national full-color magazine will be distributed to contributors to the NFA and will be available in stores on a limited basis. It will be published three times a year and will include extensive treatment, research, and lifestyle information.
-Annual Fibromyalgia Awareness Day Proclamation Program, an international program established in 1999 to promote Fibromyalgia awareness. Thousands of mayors and other elected officials have declared "Fibromyalgia Awareness Day" in their jurisdictions. Local groups have used the NFA's Awareness Day press releases to get media coverage of FM and details about their FM support group meetings out to their communities. Each year a new design is created for the annual awareness campaign, which includes a logo, flyers, buttons, and posters.
- Participation in legislative lobbying to raise research funding, FM awareness, and improved patient protection under state and federal laws.
- Continuing education programs for health care professionals (FAME 2000 & 2001 conferences), distribution of workbooks that cover the most recent FM research, and mailings to help educate medical professionals on the diagnosis and treatment of FM. (A special supplemental insert for medical professionals will be included in Fibromyalgia Aware Magazine.)
- Supporting Fibromyalgia research through networking, fundraising, locating patients to participate in clinical trials, information distribution, and helping to increase communication between researchers and the FM community.