National Fibromyalgia Association

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National Fibromyalgia and Chronic Pain Association
Founded 2011
Founder Janet Favero Chambers
Type 501(c)3
Focus Patient education
Medical education programs
Supporting research
Location
  • Logan, Utah
Area served International
Product Education
Key people

Janet Favero Chambers
Sharon Waldrop
Tom Hintz

Rae Gleason
Slogan A Global Community to Support, Advocate, Educate and Research
Mission The National Fibromyalgia & Chronic Pain Association unites patients, policy, medical and scientific communities to transform lives through visionary support, advocacy, research and education to develop affordable and accessible treatments and cures for fibromyalgia and chronic pain illnesses.
Website http://www.fmcpaware.org/
NFA Officially handed over all copyrights to the NFMCPA in 2011.

National Fibromyalgia & Chronic Pain Association (NFMCPA) is a United States nonprofit organization founded to support persons with fibromyalgia (FM) and other chronic pain illnesses. The National Fibromyalgia & Chronic Pain Association (NFMCPA) is a 501(c)3 not for profit organization. It works to support people who have chronic pain illnesses and their families and friends by contributing to caring, professional, and community relationships. Through continuing education, networking with support groups and advocates, and affiliation with professional organizations, the members of the NFMCPA have a place to be informed, get involved, and recognize achievements. The association is serious about life and enjoying it. The NFMCPA addresses the controversies, prejudices, and the life-altering effect of fibromyalgia and overlapping conditions on millions of people. These issues combined with the recent shift in the American College of Rheumatology’s FM diagnostic criteria that now includes 42 symptoms in the patient medical assessment which are all part of FM co-morbid conditions are at the core of the formation of this new association. The appreciated contributions of experienced leaders from other non-profit FM organizations, including scientific research and physician education and patient outreach including resources to live better with FM and raising awareness about the condition are reflected in this organization.read more.

Mission[edit]

The National Fibromyalgia & Chronic Pain Association unites patients, policy, medical and scientific communities to transform lives through visionary support, advocacy, research and education to develop affordable and accessible treatments and cures for fibromyalgia and chronic pain illnesses.

Vision Statement: The goal of the National Fibromyalgia & Chronic Pain Association (NFMCPA) is to educate people affected by fibromyalgia and/or chronic pain illnesses and the medical community as well as the public, government agencies and scientists regarding the importance of timely diagnosis and appropriate treatment of FM and overlapping conditions in order to gain the most positive outcome for this patient population.[1]

Development[edit]

Executive summary:

In October 2010, the NFA announced a collaboration between CURE FM and the National Fibromyalgia Association. The NFA had been experiencing serious financial hardship, and then their president sustained a disabling accident. I offered to help however I could. The NFA had started its reorganization and financial restructuring, and it was my understanding at the time that this collaboration between the NFA and CURE FM would result in my leading a new, stronger, independent nonprofit organization that would continue to serve the fibromyalgia and chronic pain communities. My choice of a similarity in name was to make an easier transition for the community, to embrace the chronic pain overlapping conditions aspect of FM, and to anticipate a broader research framework to understand FM. In December 2010, I expanded the name of CURE FM to the National Fibromyalgia & Chronic Pain Association. When the NFA introduced me to their constituents via their newsletter and to the thought leaders of the community, I knew I was taking on a daunting, yet honorable and humbling task. In every communication to the public, the NFA has strongly endorsed my organization and encouraged the community to support it. The NFA transferred its key programs to the NFMCPA, including its Leaders Against Pain program and National Fibromyalgia Awareness Day. Publicly the NFA’s Board of Director Chairman said the NFA could not financially sustain their programs. Again, my moving forward with the NFMCPA was with the understanding that Lynne Matallana, president and founder of the NFA, would eventually step down to focus on a new for-profit company, that the NFA would restructure while it paid its debts, and that the NFMCPA would not have competition from the NFA. One of my roles as the president/founder of my organization was to help the NFA have a gracious exit from non-profit public expectations and create a smooth transition of responsibilities to the NFMCPA. With the NFA’s blessing, the NFMCPA held its first National Fibromyalgia Awareness Day event in Logan, Utah, in May 2012 and provided support to other Awareness Day events around the country. We are currently planning for the 5th annual Leaders Against Pain, scheduled for August 2012. Rae Marie Gleason, the NFA Executive Director, said in an NFA press release at the time of this collaboration: “Ms. Chambers’ relationship with the NFA coalition and our like-minded philosophy of the need for a collaborative effort between researchers, health care providers, patients, legislatures and corporations made

Founders[edit]

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.[2] Matallana had first experienced symptoms of pain and fatigue in 1993, and by 1997 had visited 37 doctors before being diagnosed with fibromyalgia.[3][4] Richards said that she had become ill in 1989, but did not receive a diagnosis of Fibromyalgia until 1996.[5] 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,[6][7] which developed over the following five years to become the NFA.[8] The economic crisis forced us to enact this plan of action ahead of schedule and identify key leaders to help us in this endeavor. Jan Chambers, a LAP graduate and the Director of the NFA Coalition is also the founder and President of a Utah 501 c 3 nonprofit organization, the Center for Understanding, Education, and Research of Fibromyalgia (CURE FM). She was a prime candidate and a passionate supporter of the FM community who came to us volunteering her time and expertise. Recently her group was renamed the National Fibromyalgia and Chronic Pain Association (NFMCPA), which has the capacity to represent the fibromyalgia community through high profile and public-awareness events, as well as to further become involved in research opportunities. The NFMCPA will also work to ensure that an interest will remain in continuing to investigate FM's relationship to overlapping conditions, such as irritable bowel syndrome (IBS), migraine headaches, interstitial cystitis (IC), restless legs syndrome (RLS), reflex sympathetic dystrophy syndrome (RSD), chronic pelvic pain, and other comorbid chronic pain disorders. Jan and her organization understand the importance of recognizing the connection of all of these disorders in assuring the best possible treatment outcomes for people with fibromyalgia. She is committed to educating the medical community and the patient community about the importance of recognizing and addressing each of these disorders in treatment regimens. Jan has already jumped into the FM advocacy arena by becoming involved in the national Pain Care Forum Training and Education Subcommittee and she plans to use her knowledge to continue the development of the NFA Leaders Coalition.

References[edit]

  1. ^ Staff; Staff (September 9, 2007). "Your news". sptimes.com (St. Petersberg Times). pp. paragraph 2. Retrieved 2009-07-20. 
  2. ^ "Living with Fibromyalgia, Drugs Approved to Manage Pain". Food and Drug Administration. July 17, 2008. Retrieved 2009-07-20. 
  3. ^ Mitchell, Steve (July 5, 2002). "Fibromyalgia may be on the increase". United Press International. Retrieved 2009-07-20. 
  4. ^ Berensen, Alex (January 14, 2008). "Drug Approved. Is Disease Real?". New York Times. Retrieved 2009-07-20. 
  5. ^ "Karen Lee Richards bio". healthcentral.com. Retrieved 2009-07-20. 
  6. ^ Guthrie, Patricia (September 18, 1997). "A long bike ride for the many who can't". Albuquerque Tribune. Retrieved 2009-07-20. 
  7. ^ "Questions and Answers About Fibromyalgia". National Institute of Allergy and Infectious Diseases. December 1, 1999. Retrieved 2009-07-20. 
  8. ^ "NFA History". National Fibromyalgia Association. Retrieved 2009-07-20. 

External links[edit]