It is deafeningly loud! It sounds like . . . silence.
What is that you hear?
It is deafeningly loud! It sounds like . . . silence.
That is what patients, healthcare providers, people in the general public, government agencies, industry, and especially the researchers hear when the word "fibromyalgia" is said. Who needs to be involved to increase the awareness of fibromyalgia? YOU.
What is it? How does it affect people's lives? How do you get it? How do you diagnose it? How do you treat it? Who treats it? Where do you go for help? Who is funding scientific research? Where is the voice to carry the message and to stimulate interest and to speak on behalf of millions of people with fibromyalgia?
The National Fibromyalgia & Chronic Pain Association (NFMCPA) is that voice. The NFMCPA is the organization tracking what is happening in research, access to care, and offers resources to answer all of these questions.
The NFMCPA website provides the latest information on diagnosis, healthcare professionals, where to find support groups, treatment information and research updates. The Advocate Voice monthly newsletter offers the latest information affecting your daily life. The Fibromyalgia & Chronic Pain LIFE magazine offers more in-depth articles, with many written by the foremost FM researchers and professional experts. May 12th National Fibromyalgia Awareness day activities and resources to help sponsor events worldwide are provided by the NFMCPA.
The NFMCPA's Leaders Against Pain program offers one of the most effective patient advocacy groups in the U.S. and internationally. National surveys created by the NFMCPA address a scope of concerns for people living with fibromyalgia, including access to pain medications, scientific research opportunities, access to care and government agencies' issues, including the Food and Drug Administration and the National Institutes of Health.
The NFMCPA is your organization. Just as the Multiple Sclerosis Society, the Arthritis Foundation, the Heart Association and hundreds of other nonprofits work on behalf of their patient population, that is what the NFMCPA does for you. Take a moment and ponder the importance of replacing fibromyalgia silence with a LOUD VOICE DEMANDING ACCESS TO CARE AND EDUCATION FOR HEALTHCARE PROVIDERS. Think about your future, where you are going, and where you want to finish. The NFMCPA can create that loud voice on your behalf and help change your life. Financial contributions sustain and replenish important fibromyalgia programs, advocacy, resources and helpful information listed above. Your financial support helps fibromyalgia progress and become more visible.
These are a few of the many things the NFMCPA did on behalf of people with fibromyalgia and chronic pain in 2013:
- Represented fibromyalgia and chronic pain conditions to the Food and Drug Administration and on national committees regarding prescription pain medication regulations as a voice representing concerns of people who are suffering and deserve the right to medications that help them.
- Created the National Pain Medication Survey conducted through Survey Monkey so that individual voices could be gathered and heard. The survey results are being analyzed and will be published encourage federal regulators to take these personal stories and viewpoints into consideration as they move forward with regulating pain prescriptions.
- Worked with the State of Oregon, the only state that does not recognize fibromyalgia in their Medicaid system, to advocate for rightful recognition of FM. The NFMCPA collaborated with the Oregon Health and Sciences University and succeeded in getting a hearing by the state to review their stance. If pressure is not placed on Oregon to change its discrimination against recognizing and treating fibromyalgia, its actions will stand as a president for other states to follow. A decision has not been reached, but the NFMCPA is hopeful Oregon will change their policy concerning fibromyalgia.
- Acquired the assets and contacts of the American Pain Foundation in order to continue offering resources and recognition of people in pain.
- Represented fibromyalgia and chronic pain at the International MYOPAIN Society meeting, the PAINWeek meeting and the American College of Rheumatology meeting.
- Joined 10,000 other nonprofits by aligning the NFMCPA with Network for Good to raise more recognition of the organization's mission and work.
- Created the CARE & Make Fibromyalgia Visible campaign as part of the 2013 Fibromyalgia Awareness Day platform. Contribute your time, resources and money; Advocate for quicker diagnosis and more efficacious treatments; Research for more and better answers to the puzzle that is fibromyalgia; and Educate people with fibromyalgia and healthcare professionals about diagnosis, treatment and helpful resources.
- Sponsored Fibromyalgia Awareness Day events and supplied resources for local events and programs across the globe.
- Developed content and then participated as a faculty member in "Sharpening Fibromyalgia Diagnosis and Management Skills," an online continuing medical education program for primary care doctors, nurse practitioners, and other healthcare professionals.
- Created a new healthcare professionals pain website scheduled to go live in January which will offer: CME opportunities; research updates; articles by fibromyalgia and pain professional experts; calendars of medical education events and meetings and videos.
- Assisted the Food and Drug Administration by announcing and promoting the December 10, 2013, fibromyalgia patient meeting (which was cancelled due to weather but will be rescheduled).
- Along with Dr. Robert Bennett, helped create a patient survey addressing the FDA's meeting questions. The results of the survey will be presented in written format to the FDA. The results will also be posted on the NFMCPA website in three installments by Dr. Bennett shortly after the first of 2014.
- In collaboration with Dr. Kim Jones head of OHSU's Fibromyalgia Research Team helped promote a Mindfulness Survey to NFMCPA constituents to assist with a scientific study. The results of the survey were reported at the International MYOPAIN Society meeting in Seattle and have resulted in several articles for NFMCPA readers.
- Sponsored the "Fibromyalgia Impact on Families" survey questionnaire for Dr. Dawn Marcus.
- Sponsored graduate student Veronica Mueller's survey questionnaire to help rehabilitative and health professionals develop effective treatment strategies for FM.
- Partnered with the American Academy of Nurse Practitioners and Pfizer, Inc. to launch the "Functioning with Fibro" survey.
- Opened an online store with awareness products for fibromyalgia and chronic pain.
- Continued to produce and provide the free monthly Advocate Voice newsletter and digital Fibromyalgia & Chronic Pain LIFE magazine
- Updated the NFMCPA website, improving access to resources and other information as well as expanded our Association's social networking outreach.
- Created the Leaders Against Pain Advisory Board, consisting of Sharon Waldrop, Tom Hintz, Liz Helms, Amye Leong, Barbara Kornblau, Jan Chambers and Rae Marie Gleason to expand the program, offer advanced training and to increase the numbers of Leaders in the LAP in the program so that more fibromyalgia and chronic pain advocacy can be created and enacted. The immediate goal is to have at least one LAP in each state and an increase in international LAP in foreign countries.
- Through the website, newsletter, magazine and social networking the NFMCPA continues to update our constituents by offering relevant scientific research information, advocacy information, and other relevant resources.
Please make a tax deductible donation to the NFMCPA or ask your friends, family and other supporters to make donations on your behalf to help assure that these programs continue and that silence is replaced with a deafening noise!