Dear NFA Friends:
I’ll never forget the day in September 1997 when I got the call that said, the “National Fibromyalgia Awareness Campaign” had been chosen to become a project of an incubator program, which would allow us to serve the fibromyalgia community as a non-profit organization. Within a short amount of time we had decided to re-name ourselves the “National Fibromyalgia Association” (NFA) and we had been granted our own independent non-profit status!
Although the NFA started on a card table in my family room, over time we have become the most well-known and influential NPO representing people with fibromyalgia in the world. Karen Lee Richards, my co-founder and myself, along with a group of dedicated women with FM worked as much as our painful muscles and joints would allow us and met regularly to plan conferences, write letters to the media, prepare a newsletter and answer thousands of letters and phone calls from others with FM who were desperate for information and help.
Over the last twenty + years the NFA has evolved in its ability to help people with fibromyalgia and spread awareness about the life altering effects of this stigmatized and often discounted illness. Having spent over two years in bed myself and seeking help from doctor, after doctor, which resulted in no real treatment recommendation or hope for finding relief in the future, I found that one of the best pain reduction methods for me was to concentrate on the NFA and to put my focus on creating ways to help and support the FM community. Once we got the media’s attention, things started to change at a much faster pace and we were able to find more support for new ways to help facilitate research, help provide patients with resources and information, (like our magazine Fibromyalgia AWARE) and raise funds that would allow us to put on top quality international patient conferences, Awareness Day events, leadership training programs like “Leader’s Against Pain”, and encourage the FM community to participate in online research projects including our “FM Patient Survey”. With over 3,500 people participating in the survey, it resulted in being the most comprehensive amount of data ever collected, from people with FM. It was published in the BMC Journal and shown as a Poster Presentation at The American College of Rheumatology Scientific Meeting. Dozens of research projects were able to utilize the data collected from the survey resulting in a better understanding of fibromyalgia and causing attitudes about the disorder to change.
By 2007 the NFA’s credibility was unquestionable, and I was invited to speak at conferences and “Train the Trainer” programs all around the world. Fibromyalgia AWARE magazine was being sold at Barnes & Noble Bookstores and many of the NFA’s patient volunteers were hosting and participating in awareness events and being interviewed by major media platforms. At times I felt so proud of all we were accomplishing, and then at other times I would see how many people still needed assistance and I would realize, despite all our work there was still so much more to do! The intensity of the situation never seemed to let up and living with the pain of FM myself I knew that we had to keep focused and continue to do whatever we could to help the millions of people who were still living with pain and at times felt without hope.
“HOPE”! That was the word we had used over and over.
“Don’t give up hope!”
“There is hope for a brighter future.”
“Please, stay hopeful!”
Yes, having hope was important and still is, but one day it hit me. Why should our community be “hopeful”? Yes, the NFA was leading the patient charge for more awareness and acceptance, increased research and better treatments, but what was being done to reach these goals in the timeliest manner? The NFA and the FM community were doing an amazing job, but we were going to need a lot more help and a lot more money to accomplish our goals! How could a non-profit organization made up of 25 people try to raise enough money, run all the programs necessary, advocate for change, answer everyone’s questions, give support and make sure that 10 million people were going to one day have their “Hope turn into Reality”? I wasn’t sure how, but I did know that we were going to have to find new ways to complement what the NFA was already doing.
In today’s world change is a daily occurrence… new technology, new ways of doing things, new types of communication, and new approaches to health care. In 2012 Dave Williams, PhD (Co-Director of the Chronic Pain and Fatigue Center at the Un. Of MI) and his colleagues had their article, “Interventional pain medicine: retreat from the biopsychosocial model of pain” published in the TBM. They argued that a new more integrated approach was necessary to improve outcomes for people living with chronic pain. In 2016 the National Pain Strategy was released by the National Institutes of Health and its recommendations were in line with the TBM article.
It was during this time, I was also looking at the existing medical system and comparing it to what I had experienced as a pain patient and what I had learned from the members of the FM community. It was obvious people in pain weren’t getting better! If we were going to tell people they needed to have hope then we had to have a plan that would create a new way to improve the understanding and treatment of pain, which would provide help that would result in what the community was hoping for… improvement in their health and a reduction in their pain!
I knew my new plan would change the future for people with FM and chronic pain, but it was going to take a lot of time, energy, and money, as well as convincing and encouraging others to believe in my vision. There were times when I wasn’t sure what was going to happen. Could the NFA survive? Could this “trail blazing plan” that I believed in, become a reality? Could I build a team of experts that believed in my plan, and who would be willing to donate their time to help create a new way for people in pain to find help?
Well, I am overjoyed to let you know the answer was…YES!
Yes, the NFA has continue to serve the FM community and increased its efforts to support and educate patients, facilitate research and keep the media informed.
Yes, my business model to create an interactive, destination web-based community, which would provide better access to care, education on new ways to treat pain, and use technology in new ways that would help create tools to empower patients and health care providers so as to improve patient outcomes! My plan to build a digital, e-health “Community Pain Center” was in line with both the National Pain Strategy and the beliefs of the pain research and medical communities.
Now I see a way for the FM community and others with chronic pain to have their “hopes” turned into “reality”! So, if you are hoping for improved access to care, that can save you money, provide you with more information and opportunities to find new treatment options, be able to belong to a community where your pain is never questioned, where you will be able to do things to improve your health without ever having to leave your home…then we are creating…“What you have been hoping for!”
We aren’t that far away from making the “Community Pain Center” a reality, but there is still some work to be done, and we will need your help. We will keep you updated and I will continue to pledge to you the FM community, just like I have for over 20+ years– to do everything possible to help ensure that each of you will have access to ways that will provide you with a better quality of life, and we will do it in the fastest way possible!
Please remember, you are not alone, and there are many people, including myself who are working hard to make sure the future will be bright for everyone living with pain!
NFA Founder & President