The American Fibromyalgia Syndrome Association’s (AFSA) primary mission is to fund superior quality, scientific studies on fibromyalgia syndrome (FMS), which is an extremely painful, fatiguing, and often debilitating medical condition. Studies show that FMS affects 3-5% of the general population.
By stepping up research on the causes and treatments for fibromyalgia, AFSA and its generous contributors are working together to make a substantial difference in the lives of millions.
AFSA was formed as a 501(c)3 charity in 1994, at a time when the U.S. government was spending less than a penny a patient on fibromyalgia research. While the government is becoming more involved in funding research, it often takes AFSA or other small funding charities to jump-start ideas that move in new directions.
With research grants from AFSA (ranging from $15,000 to $50,000), talented scientists collect information to support their ideas so they may apply to the government or other agencies to continue their studies on fibromyalgia. As more is learned about fibromyalgia, additional intriguing questions are posed, and AFSA’s role in funding research continues to be essential for progress in the field.
Over 90% of contributions to AFSA go directly to research. AFSA is administered and run by volunteers, eliminating overhead and other large, office expenses. This includes administrative services that are offered by Fibromyalgia Network, and services of the medical advisory committee (MAC) that determines which grant applications should be funded.
Testing therapies that may greatly benefit people with fibromyalgia is a top priority for AFSA. Yet, the goal of better treatments strongly relies upon an improved understanding of what is occurring on a biochemical basis.
With AFSA’s financial assistance, we are hopeful that the following questions can be answered about fibromyalgia:
- What are the mechanisms involved in producing the body-wide pain?
- Why do patients wake up from a night’s sleep feeling stiff, achy, and tired?
- Do sleep disturbances in fibromyalgia play a role in generating the symptoms?
- How is the extreme fatigue and dyscognition (jumbled thoughts and memory impairments) related to the physiology of fibromyalgia?
- To what degree does treatment of muscular knots lead to reduced pain and improved function? What is the most effective therapy for targeting the muscle pain in fibromyalgia patients?
- Are there medications used for other conditions that should be evaluated for treating people with fibromyalgia?
- Can laboratory tests be used to accurately identify or diagnose patients? Also, can this information be used to determine disease severity or aid in predicting more successful treatments for individual patients?
Providing answers to the above questions will favorably impact fibromyalgia patients, which is why they form the basis of AFSA’s research-funding goals.
How Projects Get Funded
AFSA’s medical advisory committee (MAC) is made up of scientists in the field who independently grade project proposals.
Ideally, an investigator e-mails AFSA a letter of intent (LOI) consisting of a one-page summary that states their hypothesis, study goals and design, estimated budget, and a short explanation about how their project will lead to the improved well-being of fibromyalgia patients (i.e., patient relevance).
The LOI is sent to two or three members on the MAC to determine if the project idea warrants submission of a full grant application. Full grant applications are individually evaluated by at least three members of the MAC.
The principal investigator or his/her collaborator must be an experienced, published researcher. All expenses in the budget must pertain specifically to the project. AFSA does not pay for institutional overhead, large equipment expenditures, or substantial salaries. Patient-relevant means that the proposal (at least in concept) must have the potential to improve the lives of patients or the credibility of the condition within the next five to seven years.
In addition to evaluating the applicants’ skills, projects address AFSA’s research goals are graded based on originality, quality of study design, appropriateness of the budget, and most importantly, patient relevance. The grades from all of the reviewers are averaged and only those applications with an excellent score and only minor recommended changes from the MAC are approved for funding.
Why Donate to AFSA?
There are no effective therapies for the unrelenting symptoms of fibromyalgia. This condition is often devastating to both patients and their families. Getting new and talented investigators to enter the field of fibromyalgia is essential for accelerating research and improving treatment options. AFSA’s small grants program offers an opportunity to these dedicated scientists to initiate new avenues in fibromyalgia research.
When AFSA-funded investigators are asked, “What did the AFSA award mean to you?”—many say it was the initial stepping stone that got them started in fibromyalgia research. Most were well-known for their work on other painful conditions, but it was funding from AFSA that lured these talented scientists into the field of fibromyalgia.
More effective treatments are key to making fibromyalgia manageable, but this requires your tax-deductible donations to research. Join us in our mission to improve the lives of millions with fibromyalgia by helping to fund studies that lead to effective treatments.
The fibromyalgia patient community has been extraordinarily generous throughout the years and are to be commended for their willingness to fund research, yet more donors are needed to accelerate advances in treatments. Help improve the quality of life for millions by making a donation to AFSA today.
Board of Directors & Medical Advisory Committee
Board of Directors
|Arne Oftedal, CPA,
Chief Financial Officer
|Charles Lapp, M.D.,
Medical Advisory Committee
M. "Misha" Backonja, M.D.
|Robert M. Bennett, M.D.
|Jed Black, M.D.
|Laurence Bradley, Ph.D.
|Daniel J. Clauw, M.D.
Ann Arbor, MI
|Avram Gold, M.D.
|Nathaniel Katz, M.D.
|Charles Lapp, M.D.
|William Maixner, D.D.S., Ph.D.
Chapel Hill, NC
|Daniel J. Wallace, M.D.
Los Angeles, CA
|Linda Watkins, Ph.D.