National Fibromyalgia Association

Last updated
National Fibromyalgia Association
Founded1997
FounderLynne Matallana
Karen Lee Richards
Type 501(c)3
FocusPatient education and support
Medical education programs
Facilitating research
Location
Area served
International
Product Education
MethodAssistance to support groups
Fibromyalgia AWARE Magazine
Fibromyalgia Awareness Day
Leaders Against Pain Coalition
Legislative lobbying
Ongoing media presence
Key people
 Founder:Executive Director:
Lynne Matallana Board of directors:
Richard Matallana
Michael Seffinger, DO, FAAFP
Craig Kennedy
Bas Mulder
Website fmaware.org

The National Fibromyalgia Association (NFA) is a nonprofit organization whose purpose is to help improve the quality of life for people living with fibromyalgia (FM) and other chronic pain conditions. The NFA has worked to build international awareness of this chronic pain disorder, provide patient assistance and support, educate the medical community, facilitate and implement research, and build collaboration between the patient, health care providers and scientific communities.

Contents

Mission

The National Fibromyalgia Association's mission is to help people affected by FM by organizing awareness events, media coverage, support and training for support group leaders across the United States. The NFA produces informational materials, hosts patient and health care provider web sites, and publishes the magazine Fibromyalgia AWARE. [1]

Development

First known as the National Fibromyalgia Awareness Campaign, [2] the NFA was founded as a 501(c)3 nonprofit organization in 1997 in Orange, California, by Lynne Matallana [3] [4] [5] and Karen Lee Richards. [6] The organization developed an educational website FMaware.org [7] [8] In 2002, [9] the organization also began publishing a magazine quarterly titled Fibromyalgia AWARE, which at the time was the only consumer magazine that was focused on fibromyalgia patient community issues. [10]

Through 2006, the NFA hosted six international conferences, featuring authorities on fibromyalgia who presented their research and expertise to attendees, including patients and health care professionals. More than 1,000 people attended the 2006 FAME (Fibromyalgia Awareness Means Everything) conference. [11]

The NFA partnered with Johns Hopkins School of Medicine and the Institute of Johns Hopkins Nursing in 2007, to form “The Fibromyalgia Circle of Care”, a collaboration that hold three annual initiatives [12] that work to assist healthcare providers in diagnosing fibromyalgia, [12] raising awareness of the condition, [13] and taking care of patients diagnosed with the illness.

The NFA has been covered by various media sources, including National Public Radio, [14] Newsweek , [15] The Gazette , [16] and United Press International. [17]

Founders

Co-founders Matallana and Richards have both been diagnosed with fibromyalgia. They first met in 1997 through discussions in online fibromyalgia chat groups, and shared similar concerns over incorrect diagnoses as well as a lack of available information and patient support. [6] Matallana had first experienced symptoms of pain and fatigue in 1993, and by 1997 had visited 37 doctors before being diagnosed with fibromyalgia. [18] [19] Richards said that she had become ill in 1989, but did not receive a diagnosis of Fibromyalgia until 1996. [20] After the two met, they organized gatherings with other fibromyalgia patients who wanted to increase public awareness of the issue, initiating the National Fibromyalgia Awareness Campaign, [21] [22] which developed over the following five years to become the NFA. [11] Matallana has been president of the NFA since 1997 and was publisher and editor-in-chief of Fibromyalgia AWARE magazine from 2002 until 2012. [23] Richards served as NFA's vice president from 1997 through 2006. [20]

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References

  1. ↑ Staff (September 9, 2007). "Your news". sptimes.com. St. Petersberg Times. pp. paragraph 2. Retrieved 2009-07-20.
  2. ↑ "Fibromyalgia sufferers learn to manage pain". Washington Times . January 6, 2002.
  3. ↑ Belkin, Lisa (November 7, 2004). "LIFE'S WORK; Pain as a Constant, Invisible Companion". The New York Times . Retrieved 2009-07-20.
  4. ↑ Twedt, Steve (July 13, 2008). "Fibromyalgia patients fight insurers over medication coverage". Pittsburgh Post-Gazette . Retrieved 2009-07-20.
  5. ↑ "Checkup:Fibromyalgia". The Wall Street Journal. July 7, 2004.
  6. 1 2 "Living with Fibromyalgia, Drugs Approved to Manage Pain". Food and Drug Administration. July 17, 2008. Retrieved 2009-07-20.
  7. ↑ Allen, Jane E. (July 8, 2002). "Media Mix". Los Angeles Times . Archived from the original on October 21, 2012. Retrieved 2009-07-19.
  8. ↑ Comcowich, William (January 24, 2008). "CyberAlert Awards Annual PR Grants to 29 Non-Profit Organizations: 2008". cyberalert.com. Cyber Alert. Retrieved 2009-07-19.
  9. ↑ "Web Archive". The Way Back Machine. Archived from the original on March 7, 2009. Retrieved July 2, 2016.
  10. ↑ "Symptom improvements with Parkinson drug found in fibromyalgia trial". Immunotherapy Weekly. November 17, 2004. Retrieved July 19, 2009.
  11. 1 2 "NFA History". National Fibromyalgia Association. Archived from the original on 2009-05-01. Retrieved 2009-07-20.
  12. 1 2 "'Circle of Care' Collaborative Aims to Reduce Barriers To Recognition and Treatment of Fibromyalgia". Business Wire. December 5, 2007. Retrieved 2009-07-21.
  13. ↑ "Swiss Medica is Title Sponsor of the National Fibromyalgia Association- Fibromyalgia Patient and Education Conferences". Business Wire. March 15, 2006. Retrieved 2009-07-21.
  14. ↑ Smiley, Tavis (December 24, 2002). "Interview: Karen Lee Richards discusses ways to deal with holiday stress". National Public Radio . Retrieved 2009-07-19.
  15. ↑ Underwood, Anne (May 19, 2003). "Fibromyalgia: Not All in Your Head: Thanks to brain-scan technology, this 'imaginary' ailment of 6 million people is proving to be very real". Newsweek . Retrieved 2009-07-19.
  16. ↑ Karr, Andy (June 3, 2003). "Painful reality". The Gazette . Retrieved 2009-07-19.
  17. ↑ "Some pain is real but in your brain". United Press International. October 28, 2002. Retrieved 2009-07-19.[ dead link ]
  18. ↑ Mitchell, Steve (July 5, 2002). "Fibromyalgia may be on the increase". United Press International . Retrieved 2009-07-20.
  19. ↑ Berensen, Alex (January 14, 2008). "Drug Approved. Is Disease Real?". The New York Times . Retrieved 2009-07-20.
  20. 1 2 "Karen Lee Richards bio". healthcentral.com. Retrieved 2009-07-20.
  21. ↑ Guthrie, Patricia (September 18, 1997). "A long bike ride for the many who can't". Albuquerque Tribune . Retrieved 2009-07-20.
  22. ↑ "Questions and Answers About Fibromyalgia". National Institute of Allergy and Infectious Diseases. December 1, 1999. Retrieved 2009-07-20.
  23. ↑ "Q & A with Lynne Matallana, Founder of the National Fibromyalgia Association". Pro Health. November 15, 2004. Retrieved 2009-07-20.
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