On March 12th I was happy to post a much anticipated update to the status of the National Fibromyalgia Association. From it we learned of Jan Chambers and her recently established non-profit The National Fibromyalgia and Chronic Pain Association, and of the several NFA programs that have been transfered and are now going to be preserved by the NFMCPA.
Because of the confusion and concern that remained about Jan and the NFMCPA, I reached out to her and asked if she would be interested in making a statement about the work she has been doing and about the future intentions of the NFMCPA as a resource for the fibromyalgia community. Happily she agreed, and her message is directly below.
Jan and I both agree, an open and honest approach is the best way to ensure trust and good will in our community. Jan is eager to do just that and is hoping you will take the time to read her story and comment about how you would like to be informed and involved moving forward.
Wow, where to begin? We’ve all been dealt a serious blow and felt grief at the NFA’s difficult news from the NFA President’s Message sent out on March 10, 2011. I’ve known about the situation for a few months, but it was not my information to share. I had to wait until the NFA decided to make their announcement public before I could speak publically. I wish them well in their new restructure and express appreciation for the good work they performed over the years.
I’m very happy that I am now able to share some wonderful news about a new organization called the National Fibromyalgia & Chronic Pain Association (fmcpaware.org). The NFMCPA will work for the continuation of certain important programs handed off to us from the NFA, such National Fibromyalgia Awareness Day events, Leaders Against Pain program, support group training program, Coalition, and advocacy. We (NFMCPA) are still under a little bit of website construction, but we’ve come a very long way in nine weeks. As the president of the National Fibromyalgia & Chronic Pain Association, I have the full confidence and endorsement of the National Fibromyalgia Association to revitalize and invigorate these programs that are now part of the NFMCPA. NFMCPA is an independent organization from the NFA.
The NFMCPA was designed as a place where people could feel at home and that they are a vital part of the community. Fibromyalgia is a unique illness that has overlapping conditions and chronic pain. People with FM know this, and my heart’s desire is to provide a place for education, advocacy, science, leadership, camaraderie, and healing to co-exist.
To understand the beginnings of the NFMCPA, it seems most helpful to start here:
When CURE FM (Center for Understanding, Research & Education of Fibromyalgia) was created in November of 2008, I was passionate about bringing science and people together to find solutions for fibromyalgia. I have FM and know how devastating it is to individuals and their loved ones. As a small umbrella organization, CURE FM was poised to work with those who need affiliation with a non-profit organization for the development of scientific treatments or support systems for FM. I re-purposed CURE FM to respond to the needs of the fibromyalgia and overlapping conditions/chronic pain community, and it will be known as the National Fibromyalgia & Chronic Pain Association. After I created CURE FM, I traveled extensively (35,000+ miles) over 19 months to learn from all segments of the fibromyalgia community. One element seemed important as I studied, and that is to address fibromyalgia as a unique illness with overlapping conditions and chronic pain.
With passion and love for this endeavor, I work closely with one full-time staff member, one part-time staff member, and I hired two skilled IT gentlemen in a local Internet Service company. My work has been fully voluntary, and my husband and I have financed the work to this point. I am very grateful that we were in a position to do this even though we are a middle class family.
The past nine weeks have been intense, and we have worked many late hours and days to prepare a home to welcome the transferred NFA’s programs and the fibromyalgia and overlapping conditions/chronic pain community. We tried a couple of different website formats before we found one that works for the NFMCPA. In the NFA’s organizational restructure, it was determined that the NFA would continue to develop CME programs and research. There will be overlap with the National Fibromyalgia & Chronic Pain Association’s work to educate and increase visibility for fibromyalgia. These are significant functions that underlie and support the FM community. There will be shared information as we embark on the important endeavors of these two organizations.
I am familiar with the several questions posed online recently, and I appreciate the sincere interest and concern shown. A response to those concerns may help, especially with regards to constituency contact (i.e., emails). Please rest assured that this is protected information, and they have been respected throughout this process. No e-mail addresses were sold to anyone, nor will they be. This was always, and continues to be, the policy of the NFA. It is also the policy of the NFMCPA. By law, the NFMCPA and the NFA have included an unsubscribe link on the emails sent to the recipients.
Janet Favero Chambers, President
National Fibromalgia & Chronic Pain Association