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.
Begin Message From Jan Chambers:
Dear Dannette,
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.
Sincerely yours,
Jan Chambers
Janet Favero Chambers, President
National Fibromalgia & Chronic Pain Association
fmcpaware.org
I’m a little fuzzy on the details here, I see a lot of self horn-tooting but little sincere or genuine compassion or perceivable commitment toward truly accomplishing anything. Telling members that they will continue the good work the NFA has done isn’t very settling right now. I think the NFMCPA seems like a new excuse to squander precious money given by members desperate for someone to do “something”; just because an organization is a non-profit doesn’t mean they’re not allowed to make money or pay the CEO very generously. I have no faith in this new organization as anything more than an ego trip in a power suit. Tell me, NFMCPA what you’re going to do differently & why I should support this organization?
Thank you Dannette, for reaching out to Jan and the new NFMCPA organization for more information on the restructuring of the NFA.
I attended the NFA’s International Leaders Against Pain (ILAP) conference in 2008 along with @ 135 others interested in learning more about different ways to advocate for FM awareness. This automatically made me eligible to join the ILAP Coalition whose goal is to continue FM advocacy efforts on all fronts. Unfortunately the NFA was never able to move forward with the Coalition. The reasons for this are above my clearance level but the general consensus is that they were financial reasons. Now that the NFA is reorganizing and letting some programs go, Jan Chambers and the NFMCPA have been there to pick up some of the slack.
I see this as a good thing and I hope others will wait and see how the NFMPCA pans out before making a negative rush to judgment.
As Jan mentions, the NFMCPA is a new organization but you can get a good idea of what they will be about from the website fmcpaware.org. You can also see that parts of the website are not yet filled in because the organization is brand new and is in the process of figuring out exactly what it’s role in the FM community will be.
I for one would like to see less back biting, name calling and negativity and a lot more cooperation among all of the organizations that are working to advance all aspects of the cause of FM: Awareness, advocacy, education, research, community, etc.
United we stand, divided we fall.
I’ll “stand united” when there is an organization that I can back. There’s been a definite lack of transparency throughout all this.
And I’ll probably catch flack for this opinion, but I think as long as someone with fibromyalgia is in charge we’ll never have a leader that operates at 100 percent. We’re fighting a battle against perception as well as looking for a cure. Think about it.
I got the most interesting comment on my blog post… http://www.fibrochondriac.com/2011/03/19/colorless-green-ideas-sleep-furiously/#comments
My fibro fog has left me without the perfect words I wish to use, but I agree the NFA could have handled their situation in a more professional manner; however, are any of us perfect? Sometimes our illness just leaves us paralyzed in our thinking…if we can’t do it perfectly, we hold off doing anything. They have done much good for our FM community in raising awareness. Remember the old days of people saying “fibro what?”.
I choose not judge the new NFMCPA by the recent actions of the NFA. I am choosing to expect good things to come that will take patients, caregivers, & health care providers to a better understanding of the chronic pain caused not only by fibromyalgia, but also the overlapping conditions.
We all have to start somewhere. If you have any good ideas to share on new programs or how to expand or improve other programs why not send Jan an email. I know she would welcome any constructive feedback in the development of this organization that will be focused on things that will improve the resources we have to manage the daily challenges we face courtesy of FM.
I am a physical therapist (who does not have FM) trying to support the folks in my area of Lumberton, NC. I searched on Fibromyalgia and found the NFA website with a fabulous magazine to share with my patients but no person on the phone to consult with. I am thrilled to see that the cause is being upheld in the light of financial and health difficulties, but I don’t understand why everyone isn’t thrilled. I am looking for someone to perhaps speak at our brand new Fibromyalgia Support Group (someone positive, please) or to at least give me some resources. I want to let my folks know that that “fibro what?” is a thing of the past and that they are not the only one. Congrats on the restructure. Please let me know if I can support your group here in Lumberton or if you can support mine. God Bless your efforts, Julie.
I am writing to you from the Buffalo, NY area. I live in Niagara County and I have been asked by the Examiner to write some articles about Fibromyalgia. I would like to go to Support Groups in our area to get more information on how we are helping people with Fibro in Niagara/Erie County.
When I look for this information on line, I do not find a link to go to. Do you know if there are any support groups for Fibro in these areas?
I thank you for your help.
Blessings
Kristin
Ms Chambers is usually unclear and unthorough when it comes to pan, from my point of view. Although on one hand she talks of cures for pain-she, as part of the IOM study on pain indicated she doesnt believe in cures on pain. A leader should be clear on what their vision and plan is and from my perspective MS Chambers leaves a lot to be desired when it comes to having a vision and a plan for both people and fibromyalgia and people in pain. As Montesqui once wrote many people try to do good but its not easy to do it well. LIke numerous organizations dealing with pain before MS Chambers runs the risk of going along to get along instead of charting a new course to help people who are suffering.
Well I would rather be on the side of ” she has a need and wants to help. The key is help. What are you doing with your not so positive statements? I too have FM and want to thank her for standing up there. If I can help let me know.