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.
- Helped with additional funding for an NIH sponsored Chiari/fibromyalgia study at the University of Washington, by Dr. Dedra Buchwald.
- Funded a Chiari malformation/cervical spinal cord, fibromyalgia study by Dr. Dan Heffez, Chicago, IL
- Funded a 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. Results presented at the 2000 ACR Meeting.
- Partiallyfunded a functional MRI study at Georgetown University, published in the May 2002 edition of Arthritis and Rheumatism.
- 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 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.
- Presented the 2006 "Fibromyalgia and the Central Nervous System" Researchers Symposium in Salem, Oregon.
- Presented the 2004 “New and Future Directions in Fibromyalgia Pain Management “ Researchers Symposium in Portland, Oregon.
- Presented the 2002 “Neurology and New Treatment Modalities in Fibromyalgia” Researchers Symposium in Portland, Oregon.
- Presented the 1999 “Subgroups in Fibromyalgia” Researchers’ Symposium in Portland, Oregon: Fifteen medical researchers presented their most current fibromyalgia research projects.
- Hosted FMS physician information booths at the following conferences: American College of Physicians; American Psychiatry Association s 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; American Academy of Pain Medicine; Congress of Neurological Surgeons; American Academy of Pain Management.
- Co-sponsored with Presbyterian Healthcare and neurosurgeon, Dr. Michael Rosner, a January 1999 FMS seminar for medical professionals in Charlotte, North Carolina.
- Exhibited at MYOPAIN 01; attended MYOPAIN 98 in Italy; hosted an information booth and was a sponsor for MYOPAIN 95.
- 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 7th 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.
- Produced Fibromyalgia Awareness Bracelet
- WallStreet 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 and maintains the NFRA Internet Web site.
- Sponsor of public events including the Red Lion/Fibromyalgia Western Oregon University Basketball Tournament.
- Exhibited at FAME 2006 and FAME 2000 meeting.
- Represented at 2004 Oregon Fibromyalgia Foundation patient conference.
- Exhibited at the FAME 2000 Meeting presented by the National Fibromyalgia Awareness Campaign.
- Provide FMS updates to more than 1,000 FMS/CFIDS support group leaders.
- Represented fibromyalgia at the Arthritis Foundation’s Annual Meeting in Nashville, TN.
- Co-produced Fibromyalgia Exercise Video, “Stretching,” with Robert Bennett, MD and Sharon Clark, Ph.D., FNP.
- Served on Oregon Fibromyalgia Foundation’s, Oregon ’96 and ’98 FMS Conventions planning committees.
- Attended NIH fibromyalgia workshop in Washington, DC.
- Lobbied Oregon Senator Mark Hatfield and staff resulting in aggressive wording in several U.S. Congressional Appropriations Committee’s recommendation to the National Institute of Health (NIH) regarding fibromyalgia recognition and research funding. NFRA 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.
- Invited to and participated in 2002 NIAMS Fibromyalgia Assessment Workshop. Attended invitational 1996 National Institute of Arthritis Musculoskeletal and Skin Diseases (NIAMS) FMS workshop. Also attended the 1995 National Institutes of Health fibromyalgia information forum, resulting in a joint FMS/CFIDS Special Emphasis Panel for NIH grant review.
- Accepted as a fibromyalgia patient advocate for the Food and Drug Administration, 2003.
- Received IRS 501 (c) (3) nonprofit status in 1993