“What began as a part-time venture quickly grew into a full time “Lifes work” for Lynne!
History of the NFA
Founded in 1997 in Orange, California, by Lynne Matallana and Karen Lee Richards, the National Fibromyalgia Association (NFA) is the largest nonprofit [501(c)3] organization working to support people with fibromyalgia and other chronic pain illnesses. Lynne and Karen became acquainted in the mid-1990s through an online fibromyalgia (FM) chat group. Both women had seen numerous doctors before receiving a diagnosis and they were concerned that many people with FM were not receiving the medical attention and support that they desperately needed. Before long, the pair was sharing ideas about helping others with FM. They concluded that there was very little reliable information about this misunderstood and debilitating condition—and that patients and health care providers needed to unite to ensure helpful information was easily accessible to those with this chronic disorder .
What began as a part-time altruistic venture quickly grew into a full time “life’s work” for Lynne. After receiving non-profit status for the organization and developing a mission platform focused on executing programs to improve the quality of life for people affected by FM, the next step was to find a team of individuals who were also passionate about helping people with FM. The National Fibromyalgia Association became an organization made up of devoted individuals who made a concentrated effort to create a voice for people with fibromyalgia by supporting and staging awareness events, encouraging high profile media coverage, and providing support and training to support group leaders across the country. The NFA’s philosophy was to help empower patients and to provide them with a new level of hope for the future.
Over the next five years the NFA evolved from its humble beginnings in a make shift office in Lynne’s attic, to a nationally respected organization carrying out programs that helped change the attitudes and understanding of what it is like to live with FM. Lynne’s personal dream of growing an organization from just an idea into a thriving and effective vehicle representing the needs of an under represented and misunderstood community of patients became a reality. In a very short period of time the NFA expanded its efforts to include the development of an educational web site, the publication of an international magazine, Fibromyalgia AWARE and the development of continuing medical education programs.
Between May 2000 and March 2006, the NFA hosted six international conferences, each providing a venue for leading fibromyalgia authorities to share their research and expertise with patients and health care professionals alike. The most recent FAME (Fibromyalgia Awareness Means Everything) conference was a three day event for over 1,000 patients and health-care providers. The event marked a turning point for the NFA, which is looking forward to a future brighter than ever before as the medical community continues to learn about fibromyalgia, patients continue to develop powerful self-management techniques, and the organization continues to grow and speak out about the state of fibromyalgia.
The National Fibromyalgia Association is a 501(c) 3 nonprofit organization whose mission is to develop and execute programs dedicated to improving the quality of life for people with fibromyalgia.
The NFA has accomplished a great deal and continues to carry out a wide array of programs to meet their mission.
Programs have included:
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, regional seminars, brochures, informational handouts, video and audio tapes, newsletters, and a award winning website. Telephone assistance and online assistance gives patients one-on-one help.
The New! Fibromyalgia AWARE Magazine. For 10 million Americans, finding a reliable source of information about fibromyalgia has been almost as challenging as the illness itself!
Fibromyalgia AWARE, the first consumer magazine for people with FM, was published by the NFA from 2000 to 2012. Along with being a subscription magazine, it was also made available at Barnes and Noble bookstores. Today, Health Focus, Inc. now proudly publishes the next version of the magazine:The New! Fibromyalgia AWARE Magazine. The virtual issue of this award winning magazine still offers straightforward, insightful information and support for people with FM, but it now includes an interactive component, which allows readers to watch videos, enjoy picture galleries, or e-mail the author directly as they read the same high quality informational articles that has always been a part of AWARE magazine!
Annual Fibromyalgia Awareness Day, an international program established in 1999 to promote fibromyalgia awareness. Thousands of mayors and other elected officials have declared “Fibromyalgia Awareness Day” in their jurisdiction, proclaiming May 12th as a day to recognize the needs of people with FM. Local groups have used the NFA’s Awareness Day press releases to garner media coverage of local events and raise awareness of FM and local support group activities. Each year a new theme is designated for the annual awareness campaign creating messages of hope and understanding.
Leaders Against Pain, an annual workshop for FM support group leader scholarship winners, who take part in a multi faceted program that provides, advocacy, media and leadership techniques. To date over 325 individuals have participated in the NFA’s LAP Coalition program.
Participation in legislative lobbying to raise research funding, FM awareness, and improved patient protection under state and federal laws.
Continuing medical education programs for health care professionals, including symposia, conferences, distribution of workbooks that cover recent FM research, special CME Journal Programs inserted into Fibromyalgia AWARE magazine, and mailings to help educate medical professionals on the diagnosis and treatment of FM.
Supporting and facilitating fibromyalgia research through networking, fundraising, locating patients to participate in clinical trials, information distribution, and encouraging communication between researchers and the FM community.
An ongoing media presence insuring coverage of fibromyalgia and related topics on TV, radio (Public Service Announcements), magazines, and newspapers. The NFA provides press releases, updated and credible source materials to encourage and assist journalists, and has developed a media library to track FM media exposure, note misinformation and promote accurate information.
The NFA is committed to implementing efforts that will increase FM awareness, improve treatment options, facilitate new research, and develop and implement programs that will continue to provide hope for a better future for people affected by fibromyalgia.
Dr. Michael A. Seffinger
Ms. Julia Birdwell
Ms. Heather Greenlee
Ms. Lauren Reed
Mr. Gilbert Smith
Mr. Paul Goodman
Mr. Brian Peterson
Mr. Harvey M. Peterson
Ms. Lynn Pugh
Mr. Richard Matallana
Ms. Kristi Hocutt
Ms. Joyce Johnson
Ms. Leslee Hoppe
Mr. Sammi Rosenfeld
Ms. Denise Woods
Ms. Jaylene Marotte
Mr. William J. Schmidt
The Bravelets Team
Mr. Brian Mayer
Ms. Heather Thomas
Ms. Naoma Nicholls
Ms. Janet Ruth Golding
Ms. Patricia Valentine
Ms. Claire LLamas
In the name of…
Ms. Julia Harrison Fortunato
Ms. Linda McDaniel
In the name of…
Ms. Allie Kathryn McCoy
Love, Kim & Karen Silver
Many Thanks to the Trust of
Rochelle E. Bain
Mr. Charles Wax
In Memory of: Bea E. Magie
Your support of the NFA makes it possible for us to continue to serve and assist the Fibromyalgia Community.