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

If there is one constant in life – it is change. And change is what the NFA is experiencing. The below President’s Message from Lynne Matallana goes into great detail as to what led up to the necessary changes, the current status, and future intentions for the NFA. I appreciate that they finally came forward with an explanation and wish them the best of luck in their time of transition.

Begin message from the NFA:

	Educating Encouraging Empowering

March 10, 2011
Dear NFA Friends and Supporters,

When the National Fibromyalgia Association (NFA) started 14 years ago, our purpose was to bring awareness and legitimacy to fibromyalgia (FM). Over the years, the needs of the community grew and so did our concern for people affected by FM and those in the medical and research communities dedicated to helping us. We wanted to share with the media what it was like to live with FM so that others would become concerned and could help us to make sure things were moving forward so that people with FM would have better support, more effective treatments and a better quality of life. The ultimate goal has been and continues to be that through research and education we would learn the cause and how to treat, prevent and/or cure it.

The organization was started and grew out of my attic into a full scale international nonprofit organization which achieved great recognition and credibility with patients, the medical community and government agencies. Over the years the needs of this large population of people which we represented continued to grow. We found ourselves in a position where we couldn’t say NO to anyone who proposed new programs addressing the needs of this community because we understood the many obstacles and unmet needs that faced people with FM every day. We wanted to help ensure that everyone with FM obtained a better quality of life and receive the medical care they deserved.

At the end of 2007 no one anticipated the looming national economic downturn. The NFA like all other nonprofit and for profit organizations was not prepared for our country’s financial crisis, reduced foundation funding, or the impact of new restrictions and tighter transparency regulations put on companies that helped to financially support our organization. Our funding was cut by 50% to 80% and our annual $2 million budget diminished by 60% in a matter of months. There were those in the FM community who were in a position to help us, and we greatly appreciated their donations and contributions. However, because so many in the FM community are struggling and not able to make donations there was no way to make up the difference. Then, in September 2010 right at the height of the NFA financial crisis, I was in a terrible accident that resulted in a major surgery, which required four months of bed rest followed by nine to twelve months of rigorous and painful physical therapy. Even today I continue to struggle to regain my health.

This set of circumstances forced the NFA, like many other companies and particularly nonprofit organizations, to undergo a period of transition and reorganization, including staff layoffs and cut backs on major programs and services. Like many other nonprofit organizations that were adapting to our country’s economic environment, the NFA also adapted and made changes necessary to continue to fulfill the key elements of our mission by focusing on retaining the programs which would help the largest number of the FM community members. In doing so some of the personalized and individual help we had been able to provide people in the past had to be cut back or eliminated. Unfortunately, this might have made it appear that we were not concentrating on and responding to the specific and individual needs of people with FM.

Over the past seven months we have realized that you have many questions and concerns about the NFA. Had it been our choice, we would have shared this information with you, the FM community. However, we were bound by legal constrictions and agreements of confidentiality to wait until we had developed a plan that would satisfy many of our financial problems. Foremost, we felt that it was important for us to make sure that people with FM would have the NFA and other organizations available to continue to serve the community. In order to make sure that would happen, we had to stay within the bounds of these legal constraints. We can assure you that no matter how bleak the situation our dedication to continue the work that we started so many years ago never wavered, and we have had to make some of the most difficult decisions we have ever had to make in order to assure our survival.

We are now pleased to share with you that we have reorganized and developed a new plan that allows us a platform upon which we can move forward. We are very excited that we have been able to accomplish this reorganization in such a short period of time. We believe our work will continue to benefit people with FM and allow the NFA to serve the FM community in a restructured format. In order to meet the needs of FM patients, the NFA has shared their programs and assets with other nonprofit organizations that are committed to implement some of the programs that the NFA previously developed and implemented.

Fortunately, even before we experienced the impact of these changes, the NFA had planned to subdivide and receive help implementing certain programs through its Leaders Against Pain (LAP) program. The participants of the LAP training and the members of the Leaders Coalition were going to help administer local advocacy, patient information, FM awareness and media outreach programs. The economic crisis forced us to enact this plan of action ahead of schedule and identify key leaders to help us in this endeavor. Jan Chambers, a LAP graduate and the Director of the NFA Coalition is also the founder and President of a Utah 501 c 3 nonprofit organization, the Center for Understanding, Education, and Research of Fibromyalgia (CURE FM). She was a prime candidate and a passionate supporter of the FM community who came to us volunteering her time and expertise. Recently her group was renamed the National Fibromyalgia and Chronic Pain Association (NFMCPA), which has the capacity to represent the fibromyalgia community through high profile and public-awareness events, as well as to further become involved in research opportunities.

The NFMCPA will also work to ensure that an interest will remain in continuing to investigate FM’s relationship to overlapping conditions, such as irritable bowel syndrome (IBS), migraine headaches, interstitial cystitis (IC), restless legs syndrome (RLS), reflex sympathetic dystrophy syndrome (RSD), chronic pelvic pain, and other comorbid chronic pain disorders. Jan and her organization understand the importance of recognizing the connection of all of these disorders in assuring the best possible treatment outcomes for people with fibromyalgia. She is committed to educating the medical community and the patient community about the importance of recognizing and addressing each of these disorders in treatment regimens. Jan has already jumped into the FM advocacy arena by becoming involved in the national Pain Care Forum Training and Education Subcommittee, and she plans to use her knowledge to continue the development of the NFA Leaders Coalition.

The NFA and FMCPA will also collaborate with the American Pain Foundation, the American Academy of Pain Management, PAINWeek, Allsup and other organizations focused on fibromyalgia and chronic pain. We believe strongly during these difficult financial times that organizations must work in collaboration to meet the needs of our respective communities.

We encourage you to join us in supporting Jan and her team as they continue to grow the NFMCPA and its programs. You can visit www.fmcpaware.org for information on this year’s Awareness Day events and advocacy updates. On this site you will also find a fibro-friendly doctors list, support group information and other resources, including disability news, research highlights and advocacy updates. We look forward to working with the NFMCPA, and sharing our years of experience and network of supporters.

The NFA will be available to support the FM Community and will continue to help improve the quality of life of people with FM. We are currently involved in several important media campaigns, implementing many continuing medical education programs, assisting and encouraging FM scientific research and providing information and educational materials for both the patient and medical communities. We are also dedicated to providing new opportunities for people with FM to participate in surveys and registries that will make an impact on the future direction of research and treatment development.

Even through these difficult times, we continue to provide services to help hundreds of thousands of NFA constituents. Although our normal communication channels were restricted during the past couple of months, we continue to bring our supporters information about our programs through our website, monthly newsletters, e-alerts, patient seminars, continuing medical education curriculums ,Webinars, radio blogs, Facebook and other social media outlets.

We ask for your continued patience and support as we move forward. The NFA, as always, is committed to working on behalf of all of those affected by fibromyalgia and to helping improve their quality of life.

Sincerely,
Lynne Matallana
Founder and President

The National Fibromyalgia Association is the leading non-profit organization dedicated to improving quality of life for people with Fibromyalgia. Their website has been a great resource for me as an FM patient, advocate, and support group leader. The NFA is focused on creating programs dedicated to spreading Fibromyalgia Awareness, like the Fibro Focus events that took place last year, which my support group was fortunate to participate in.

The NFA truly is the leading authority on Fibromyalgia, so when they asked me to help spread the word about the free online version of Fibromyalgia AWARE magazine, I was more than happy to help.

Fibromyalgia AWARE Magazine

Published by the National Fibromyalgia Association, Fibromyalgia AWARE is the first and only consumer magazine dedicated to the subject of fibromyalgia.

The comprehensive publication offers straightforward, insightful information and support. This reliable resource will help to improve the quality of life for people affected by fibromyalgia. The magazine includes:

• The latest news in research
• Helpful information on general health and well-being
• A balanced approach to treatment options
• Lifestyle and self-management techniques

As a non-profit organization, the NFA relies on purchases of the print version of the magazine to help them continue their mission. But now they are offering a free online version to reach and help as many people as possible.

Now we all have free access to the great stories and editorial produced in each quarterly issue. For example, here is a small sample of what you can find in the Winter 2009/10 issue of Fibromyalgia AWARE:

• Making the Invisible Visible: The Science Behind Fibromyalgia
• How to LIve a Balanced Life: Lessons from Practice of Tai Chi
• Your Best Night’s Sleep: Tips to Get the Rest You Need
• Making the Right Online Connections

There is even a special section dedicated to Disability – determining if it is right for you, dealing with the myths and landmines.

So there you have it. Quality information from a quality organization. Bravo to the NFA for creating this free online version and making this valuable information more accessible. I am happy to support their efforts and get the word out to all of you.

If you haven’t already, click on the link above to the Winter issue and get your free copy. Happy reading!

In 1993, May 12 was designated as the International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) by Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases), to memorialize the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale contracted a paralyzing, CIND-like illness in her mid-thirties and spent the last 50 years of her life virtually bedridden. Despite her illness, she managed to found the world’s first School of Nursing.

The National Fibromyalgia Association (NFA) joined the Awareness Day effort in 1997 and has led the call for increased recognition of fibromyalgia each May 12. The NFA collaborates with fibromyalgia support groups and patient advocates around the world to coordinate innovative national and international events in honor of Awareness Day. Awareness Day activities are designed to increase awareness of chronic pain illnesses including fibromyalgia, as well as to assist patients and organizations in educating the general public, healthcare professionals, government officials, and legislative bodies.

The National Fibromyalgia Association’s theme for the 2009 National Fibromyalgia Awareness Day campaign is “Fibromyalgia Affects Everyone” and will focus on the far-reaching effects of this disorder—from broken lives to the economic costs to patients and society. 

There are events going on all over the country (and world) in honor of Fibromyalgia Awareness Day. If you would like to see if there is an event going on in your community you can check the NFA community events page. 

How I plan to participate in Fibromyalgia Awareness Day

I struggled to come up with one thing for my fibromyalgia support group to do in honor of May 12. The NFA is doing a walk and I considered following their lead, but then I thought about walking, and I thought about getting other group members to walk, and I quickly decided that a luncheon would be a much more successful event. But I didn’t stop there. I schedule three events for my support group members in honor of Fibromyalgia Awareness.

On May 12 we will be having our luncheon at a local mediterranean bistro. A bit fancier than the coffee shops where we usually meet. I am looking forward to a great afternoon of socializing with the spirited and resilient members of my group. If you have the impression that support groups are depressing, this group would change your mind. Someone suggested we should be called an empowerment group instead! It is definitely under consideration.

On May 15 we are meeting at the beautiful Chopra Center in La Costa to take an intro to meditation class. Meditation is not as easy as it sounds. It takes practice to learn how to quiet your mind and breath in a manner that will restore and refresh you. At this introductory class they spend half an hour teaching about meditation, and half an hour practicing. I went to the Chopra Center last night with another group member to practice the daily 30 minute meditation, and get an idea of what to expect when we return next week. I took a couple of photos so I could share them with you.

Meditation Room

They were very welcoming and the environment is so relaxing and reverent. I hope each of my group members takes advantage of the free opportunity they are extending us.

Finally on May 16, The Wellness Center is supporting Fibromyalgia Awareness and offering a free gentle yoga class to my group members, and to anyone in the community who is interested in participating. I felt it was important to have one event that was active, and since I am a huge proponent of yoga, I am very pleased that we were able to organize this.

It is going to be a busy week, but I am grateful for my group, and grateful to the community I live in for their generosity and participation in promoting Fibromyalgia Awareness.

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