Fibromyalgia (fi-bro-my-AL-ja) syndrome (FMS) produces chronic body-wide pain, which migrates and can be felt from head to toe.

Diagnostic Criteria
Rosner Rebuttal
Central Nervous System

Compare Symptoms
Chiari I Malformation
Cervical Spinal Stenosis
Low Blood Pressure
MRI Requirements
Patient Testimonials

Dr. Heffez Information
Introduction to NFRA
NFRA Symposiums

Subgroups in FM
New Dimensions in FM
Other Abstracts

Awareness Pin
Gifts and Memorials
Calendar of Events
Resources & Web Links
Patient Organizations

www.fmaware.org
www.fmpartnership.org

An Introduction to NFRA

The National Fibromyalgia Research Association (NFRA) is a fibromyalgia syndrome (FMS) activist organization in Salem, Oregon. Our mission statement is: "Dedicated to education, treatment and finding a cure for fibromyalgia." NFRA has consistently built on this premise educationally, financially, and politically in an effort to raise public, medical and government awareness of this debilitating illness. NFRA was founded in 1992 by Jack Scott and has funded in excess of 1.6 million dollars toward these goals.

Research:

	Currently funding research project at Georgetown University and Oregon Health Sciences University to ascertain percentage of FMS patients with cervical spinal cord stenosis and/or Chiari malformation.
	Provided major funding for two separate FMS research projects to Dr. Robert Bennett, Oregon Health Sciences University. Results presented at MYOPAIN 95 and the American College of Rheumatology Meeting in 1996.
	Financed an FMS familial study by Dr. Muhammad Yunus, University of Illinois Medical School. Results presented at the 1995 American College of Rheumatology Meeting and in the February 1999 Journal of Rheumatology.
	Financed Dr. I. Jon Russell, University of Texas, for ongoing FMS scientific research studies.

Public Awareness:

	Wall Street Journal, November 11, 1999 front page article concerning neurosurgery on FM/CFIDS patients.
	Responsible for the International Racquetball Professional Tour adopting fibromyalgia as their charity for the past five years. The IRT offers FMS literature, displays a fibromyalgia banner, includes FMS information on their Internet web site and promotes research on all of their correspondence and promotional information throughout the US and Canada.
	Produced a Fibromyalgia Awareness Pin to raise public awareness and research dollars.
	Established the NFRA Internet web site.

Physician Education:

	Presented the 1999 “Subgroups in Fibromyalgia” Researchers Symposium in Portland, Oregon: Fifteen medical researchers presented their most current fibromyalgia research projects.
	Have hosted FMS physician information booths at the following conferences: American College of Physicians American Psychiatry Association American College of Rheumatology American Association of Family Physicians American Academy of Neurology American Association of Neurological Surgeons American Society of Neuroradiology American Pain Society.
	Co-sponsored with Presbyterian Healthcare and neurosurgeon Dr. Michael Rosner, a January 1999 FMS seminar for medical professionals in Charlotte, North Carolina.
	Attended MYOPAIN 98 in Italy; was a major MYOPAIN 95 sponsor and hosted an information booth.
	Co-sponsored with the Chicago Institute of Neurosurgery and Neuroresearch and neurosurgeon Dr. Dan Heffez, the June 1998 FMS seminar for rheumatologists, neurosurgeons, and other health care providers.
	Presented 1997 “New Dimensions in Fibromyalgia Syndrome” Symposium in Portland, Oregon: Twenty-two international FMS researchers met to share their scientific knowledge.
	Attended Physical Medicine Research Foundation’s 7^th International Symposium and Consensus in Vancouver, BC Canada and hosted a speakers’ reception.
	Participated in National FMS Support Group Seminar sponsored by Fibromyalgia Association of Central Ohio.

Patient Education:

	Provide FMS updates to more than 1,000 FMS/CFIDS support group leaders.
	Represented fibromyalgia at the Arthritis Foundation Annual Meeting in Nashville, TN.
	Co-produced Fibromyalgia Exercise Video, “Stretching,” with Robert Bennett, MD and Sharon Clark, Ph.D., FNP.
	Served on Oregon ’96 and ’98 FMS Conventions planning committee.

Government:

	Lobbied Oregon Senator Mark Hatfield and staff resulting in aggressive wording in several U.S. Congressional Appropriations Committee's recommendation to the National Institutes of Health (NIH) regarding fibromyalgia recognition and research funding. We also worked in conjunction with lobbyist, Bruce Cameron, and thousands of personal fibromyalgia testimonial letters to help educate Congress concerning FMS. Results: In 1994 NIH awarded 1.4 million dollars in FMS research funding. On March 26, 1998, NIH released a 1.8 million dollar Request for Application (RFA) for Basic and Clinical Research on Fibromyalgia.
	Attended the 1995 National Institutes of Health fibromyalgia information forum, resulting in a joint FMS/CFIDS Special Emphasis Panel for NIH grant review. Also attended invitational 1996 National Institute of Arthritis Musculoskeletal and Skin Diseases (NIAMS) FMS workshop.
	Received IRS 501(c)(3) nonprofit status.

National Fibromyalgia Research Association
PO Box 500, Salem, OR 97302