Rae Marie Gleason, NFA Executive Director
Dear NFA Supporters,
As the Executive Director for the National Fibromyalgia Association (NFA) I would like to take a few minutes and introduce myself to many of you who do not know my name or my accomplishments on behalf of millions of people with fibromyalgia (FM). In the spring of 1992 I interviewed for a research secretarial job in Salem, Oregon. Jack Scott a successful Oregon businessman, whose wife had been recently diagnosed with fibromyalgia (FM), was looking for someone who could help them find answers and treatment options. I had never heard of FM but as Mr. Scott described his wife’s symptoms and the frustrations they had encountered trying to find satisfactory medical treatment and recognition of the disorder, I realized this illness is what my mother had suffered with for many years. I could still remember her calling for me in the mornings when I lived at home to come and lift her arms off the bed so she could get up and get ready to go to her job at a local restaurant. She was a widow and in the early 1950s there were very few jobs available for women, but she had managed to land a position as a dishwasher and she supplemented her pay by cleaning apartments – including being on her hands and knees with a razor blade to strip the wax from hardwood floors. She also sat in restaurant walk-in coolers to peel potatoes because they stayed fresher that way – and the coldness made her hurt from the top of her head to the bottom of her feet. At the time of my interview with Mr. Scott my mom was in her mid 80s, diagnosed with Parkinson’s disease and living in a nursing home. When I visited her and asked how she was feeling, she would say, “Oh, fine – if I just didn’t hurt all over”. She passed away in 1994 from complications resulting from a broken hip; and I now believe the inadequate pain treatment they gave her at the nursing home (Tylenol) probably helped with her demise. At the conclusion of my interview I told Mr. Scott that if he needed someone to get on a soap box – I could do that and for the next 14 years we were partners in raising awareness, securing money for research and educating healthcare professionals about FM including how to make a diagnosis and how to better treat this chronic pain condition.
With Jack I helped create the National Fibromyalgia Research Association (NFRA) a 501 (c) 3 nonprofit organization and eventually I became its Executive Director. During the ensuing years I organized and presented five international fibromyalgia researchers’ symposiums which helped promote diverse scientific thought in the development of new approaches to FM treatment and diagnosis. I also developed physician educational handout materials and distributed them at annual national medical meetings including: the American College of Rheumatology, American Neurological Association, the Congress of Neurological Surgeons, the American Neurological Surgeons, the American Pain Society, the American Academy of Pain Management, the International Myopain Society and many other organizational gatherings. Through the years I personally placed more than 45,000 FM education folders into the hands of healthcare professionals. My other NFRA accomplishments included participation in six National Institutes of Health workshops and coalition meetings; working with Presbyterian Health Care to organize and present a fibromyalgia researchers symposium in Charlotte, NC; and working in conjunction with the Chicago Institute of Neurosurgery and Neuroresearch to present a fibromyalgia educational meeting for healthcare professionals in Chicago. In June, 2003, I was appointed as a fibromyalgia Federal Drug and Alcohol (FDA) patient representative. While at the NFRA we funded more than $400,000 in FM scientific research and encouraged new researchers to adopt FM as their illness to study.
In April of 2007 I joined Lynne Matallana at the National Fibromyalgia Association (NFA) in Anaheim, California. I oversee the medical education and scientific research departments and I have been instrumental in helping to develop advocacy programs as well as supervising the day to day operations of the organization. In 2010 I worked with Lynne to launch the NFA Leaders Coalition in order to assure better access to care for people with FM and to raise one, concerted voice to be heard by government agencies, corporations and the medical community.
Currently, I serve on the editorial board and am head of the Fibromyalgia Department for the Practical Pain Management journal and I sit on the advisory panel for Health Points a quarterly printed resource for fibromyalgia, CFIDS, arthritis and chronic pain, published by To Your Health. I also served on the board of the Fibromyalgia Information Foundation located in Portland, Oregon as the head of Public Relations. In June 2009, I was part of a panel made up of researchers, doctors and patient advocacy representatives that worked on Contemporary Management Strategies for Fibromyalgia, which resulted in a white paper report that was published in The American Journal of Managed Care.
Since 2008 I have partnered with more than a dozen medical education companies to develop and promote fibromyalgia and chronic pain continuing medical education (CME) programs. Several university medical schools have been the accreditation partners on these programs including: Johns Hopkins School of Medicine, the University of Michigan, the University of Wisconsin and Einstein University. My program responsibilities include working to create needs assessments, helping with program development and review and inviting and securing the medical faculties for different venues. The audiences for these CME programs include: primary care physicians, neurologists, rheumatologists, gynecologists, psychiatrists, nurses and nurse practitioners, physician assistants, psychologists, and physical therapists. In 2009 at my direction we successfully launched the Fibromyalgia Healthcare Professional website where online FM CME programs are housed. I helped develop several CME programs with Pain Educators for PAINWeek, an annual meeting held in September in Las Vegas. At the NFA we are dedicated to making certain that doctors and other healthcare professionals get the best and most comprehensive FM education possible. By being part of the creation of these CME programs we help assure that this legacy persists.
As the NFA continues its journey I look forward to helping promote FM advocacy, research and physician and patient education. I hope that my efforts will help make a difference in the lives of people who live in chronic pain and that someday, better diagnostic tools will be developed and new treatment modalities will be created that will truly make a positive difference in the lives of everyone I serve.
Sincerely,
Rae Marie Gleason
NFA Executive Director
