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’s operations started on a card table in my family room, over time we became the largest and most 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.
Over the next fourteen years the NFA evolved in it’s 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 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, it seemed like things started to change much faster and we were able to find 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 projects including our 2005 FM Patient Survey. With over 3,500 people participating in the online survey, it resulted in being the most comprehensive amount of data ever collected about people with FM. It was published and shown as a Poster presentation at The American College of Rheumatology Scientific Meeting, and dozens of research projects were able to utilize the data collected from that survey causing attitudes about the disorder to slowly start 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 in Barnes & Noble Bookstore 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 had called or emailed our office asking for financial help, support and information, and I would realize despite all our work so many people were still suffering so desperately. At times it felt like the more we were able to help our community, the more people would appear needing our assistance! 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 so miserable, and even at times without hope.
“HOPE”! That was the word! I used over and over. “Don’t give up hope”. “There is hope for a brighter future.” “Please, hold on to hope!”
Then one day it hit me. Yes, to stay positive and to be hopeful was very important. But if the NFA was leading the patient charge for more awareness and acceptance, increased research and better treatments, information on a variety of treatment options, and acting as a communication conduit between the patients and the HCP’s… we were going to need a lot more help and a lot more money! How could a non-profit organization made up of 25 people try to raise that kind of money, run all the programs, 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 a way to complement what the NFA had been doing.
For the past three years I have been working on the “new way”. I have also volunteered to help keep the NFA going and assisted the NFA Board of Directors as much as possible. It’s been a very difficult time because although I knew my new plan could change the future for people with FM and chronic pain, 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, actually become a reality? Could I build a team that believed in my plan, 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 is…YES! Yes, the NFA will continue to serve the FM community and increase its efforts to help patients, facilitate research and Continuing Medical Education. Yes, my plan is a good one. Actually it is a great one (and others agree with my opinion!) and with each day more and more people are seeing its value and joining our efforts to launch this new way of providing help that will provide better outcomes for people with pain! Do I think that everyone in the FM community and others with chronic pain will have their “hopes” turned into “reality”? Well, if you are hoping for improved access to health 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 even having to leave your home…then just maybe, we are creating,
“What you have been hoping for!”
So for now, I won’t tell you to just stay hopeful. I now have to tell you to stay hopeful and have patience. We aren’t that far away from making the plan a reality, but there is still some work to be done. We will keep you updated and I will continue to pledge to you the FM community, just like I have for 16 years– I will do everything I possibly can to help insure that each of you will have a better quality of life. And I will now add to that pledge, that I will do it in the shortest time possible!
Remember… You are NOT alone!
NFA Founder & Past President