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About the National Fibromyalgia Association (NFA)
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.
NFA History
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.
Contact Us
Corporate Offices
Lynne Matallana, President
2121 S. Towne Centre Place, Suite 300
Anaheim, CA 92806
Phone: (714) 921-0150
Fax: (714) 921-6920
Board of Directors
Mark Dobrilovic
John Fry, PhD
Richard Matallana
Michael Seffinger, DO, FAAFP
Herb Smith
N. Charle Morcos, MD, PhD
Medical Advisory Board
Charles E. Argoff, MD
Daniel G. Arkfeld, MD
Robert L Barkin, MBA, Pharm.D, FCP
Robert M Bennett, MD, FRCP
Lawrence Bradley, PhD
Dan Buskila, MD
Lin Chang, MD
Daniel Clauw, MD
Leslie J Crofford, MD
Bente Danneskiald-Samsoe, MD, PhD
Dominique Engel, MD
Patricia A Fennell MSW, LCSW-R
Bernard Filner, MD
Richard Gracely, PhD
Sudhir Gupta, MD, PhD, MACP, FRCP, FACR
June Hagen, PhD
David Hallegua, MD
Robert Harris, MD
Afton Hassett, PhD
Chris Henriksson, MD
Karl Henriksson, MD
Andrew Holman, MD
Kim Jones, PhD
David Katz, MD
Stephen Krafchick, Esq
Charles W Lapp, MD
Geoffrey O Littlejohn, MD
Manuel Martinez-Lavin, MD
Michael McNett, MD
Philip Mease, MD
Harvey Moldofsky, MD
GP Naum III, DO, FAAFP
Gunther Neeck, MD, PhD
Mark Pellegrino, MD
Dieter E Pongratz, Prof, Dr. Med
Joshua Potter, Esq
Daniel Rooks, PhD
I Jon Russell, MD, PhD
David Silver, MD
Stuart Silverman, MD
Roland Staud, MD
Terence Starz, MD
Todd J Swick, MD
Renee Taylor, PhD
Dennis C Turk, PhD
Daniel J Wallace, MD
David Williams, PhD
Patrick Wood, MD
Muhammad Yunus, MD
2007 Annual Report
Staff
Elisabeth Deffner, Executive Editor, Fibromyalgia AWARE
Jordan Aquino, Research & Program Development
John Winston, Chief Operating Officer
Rae Marie Gleason, Executive Director
Susan Watcher, Executive Sales Manager
Randy Wold, Patient Assistance Coordinator
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.
Programs
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.
Fibromyalgia AWARE Magazine. For 10 million Americans, finding a reliable source of information about fibromyalgia has been almost as challenging as the illness itself! AWARE was the first and remains the only consumer magazine all about fibromyalgia that offers straightforward, insightful information and support.
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 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 Coalition, 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 100 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 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.
External Events Agreement
The National Fibromyalgia Association (NFA) welcomes the support of many community organizations and individuals who want to help advance our mission:
To develop and execute programs dedicated to improving the quality of life for people with fibromyalgia.
Events held by individuals or organizations to benefit the National Fibromyalgia Association that are not under the organization's immediate control are known as external events. The NFA’s responsibility is limited to serving as liaison and providing information and advice. Prior approval must be obtained from the NFA whenever it is publicized as a designated beneficiary of an external event.
The NFA assumes no responsibility for unauthorized use of its name, nor for the actions of the event organizers who solicit funds on behalf of the NFA under fraudulent circumstances.
The NFA has established the following guidelines to ensure the success of your external event:
- Any information published or transmitted to the public about the National Fibromyalgia Association shall be provided by the NFA. All text copy used in print and media materials, media contacts, public relations, and/or signage must be approved by the Director of Marketing of the National Fibromyalgia Association.
- The sponsoring organization must bear all costs associated with the event. Contractual agreements for space, materials and services, and accompanying liability shall be the sole responsibility of the sponsoring organization and not that of the National Fibromyalgia Association.
- The NFA will not participate in executing the details of the event. Educational material is available for purchase in the NFA online store.
- External fundraising events must reflect values and decorum associated with the cause of raising awareness for fibromyalgia. Under no circumstances will acts of violence or those of a sexual, tawdry, or inappropriate nature be permitted. The National Fibromyalgia Association reserves the right to refuse gifts or proceeds from any external event.
- When contribution checks are made payable to the National Fibromyalgia Association, the NFA will acknowledge event participants individually and forward a letter to each in thanks for their contribution. When checks are made payable to the event organizers, the organizers will receive acknowledgement from the National Fibromyalgia Association for the entire amount of the donation.
- Proceeds from your event must be received by the National Fibromyalgia Association within 90 days.
(Click Here for External Event Form) (Click Here for Fundraising Event Form)
Seal of Approval
The NFA’s Seal of Approval can only be used by authorized corporations and organizations that have applied for consideration, met the established “Seal of Approval Guidelines” and have entered into an agreement with the National Fibromyalgia Association. For more information, email Executive Director Rae Marie Gleason at RGleason@fmaware.org.
(Note: The National Fibromyalgia Association does not endorse the O24™ topical pain reliever.)
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