The American Fibromyalgia Syndrome Association, Inc.

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AFSA is an all volunteer nonprofit organization dedicated to funding research that investigates the causes and treatments for fibromyalgia syndrome.

A 501(c)3 Nonprofit Charitable Organization.

November 2006 AFSA Update
Volume 12, Issue 1

Download the full November 2006 AFSA Update as a PDF

Three More Projects Funded!

Since our last Update, three very diverse projects have been funded by AFSA—we will summarize them in this issue! One study expands upon contributing genetic factors in fibromyalgia syndrome (FMS), while another is guaranteed to produce new developments in the field by providing much-needed brain and spinal cord tissue. Finally, one project focuses on a symptom that has not received the attention is deserves: SLEEP. Although AFSA has been somewhat “quiet” during the past two years (i.e., sending out Updates infrequently), we continue to work behind the scenes to fund promising studies with your generous contributions.

Focusing on Sleep Research

Sleep studies in FMS are difficult to find, yet disturbed sleep is a major contributor to one’s symptoms. In fact, some researchers feel that the sleep disorder in FMS may actually cause this condition. Even patients with FMS firmly believe that their terrible quality of sleep contributes to how they feel. So why is it that almost all research in the field of FMS has focused on the symptom of pain, with so little attention given to sleep? In part, the answer has to do with how easy it is to measure pain through a tender point exam versus the expensive and entailed assessment of sleep with an overnight study in a lab. In addition, where would a sleep researcher go for seed money to conduct a study on FMS?

Potential researchers could come to AFSA with their sleep-related proposals, but a quick review of the many pain-related projects funded by AFSA might dissuade them from applying. As for the National Institutes of Health (NIH), it is hard to get a study funded by the government without preliminary data ... which is where AFSA comes in handy to jump-start investigators so that they are more likely to succeed at the NIH level.

In 2007, AFSA will turn up the heat on funding sleep-related research in FMS patients. We will set aside $250,000 for five (5) individual awards to clearly establish that AFSA is interested in receiving applications to study sleep. However, unless we have several top quality sleep researchers on our Medical Advisory Committee (MAC), potential applicants will be hesitant to spend time submitting their proposals. This is why sleep researchers are being added to the MAC. Sleep experts, Jed Black, M.D., of Stanford University in California, and Avram Gold, M.D., of Stony Brook University in New York, have already volunteered to be on AFSA’s MAC.

During the next two to three months, AFSA will generate a list of research-funding priorities for FMS in the area of sleep. Then we will publicize our new funding initiative to the members of the sleep research community in hopes that we will be able to entice experienced investigators to enter the field of FMS. As the results of the awarded studies become published in the medical journals, more researchers will begin to think about FMS in terms of sleep, and AFSA-funded sleep researchers will begin to get their feet in the door at the NIH. It will take a few years for progress to be visible, but this is the same process AFSA used to jump-start pain-related research in FMS years ago (except we started with a much smaller sum of money).

A Special Message From the President

Your generous contributions have made it possible for many talented investigators to pursue FMS/CFS as their field of interest. Twelve years ago—before AFSA began funding projects—few universities had research programs devoted to the study of fibromyalgia. Now there are major centers focused on FMS research at universities around the world. While AFSA cannot take credit for all of the wonderful advances in the field, as a contributor and Member of AFSA, you should feel proud that you are making a difference! When I asked AFSA-funded investigators “What did the AFSA award mean to you?”—many said that it was an essential stepping stone to get them started on FMS research.

When AFSA began in 1994 as a small, all-volunteer organization whose only source of contributions were (and still are) from the FMS/CFS patient community, many had their doubts. Yet, you have been extraordinarily generous throughout the years. You have proven that the patient community can wield the power to direct research on your own condition! Now we are in the financial position to jump-start a research initiative on FMS sleep ... all due to the generosity of patients.

Every project described in this Update is expected to lead to important advances in our understanding of FMS/CFS, but the tissue donor bank represents an enormous step for rapidly expanding the science of this condition. Only two other medical conditions (Alzheimer’s and Parkinson’s disease) have such an elaborate tissue bank in place. It took a collaborative effort on the part of Linda Watkins, Ph.D., Dianne Lorton, Ph.D., and many of the scientists at Sun Health Research Institute (SHRI) to put this project together and to obtain major funding assistance from the National Institutes of Health (NIH). Although the NIH is expected to take on the brunt of funding for this project in the future, it never would have gotten off the ground had it not been for your donations.

As 2006 comes to a close, consider making a tax-deductible, year-end donation to AFSA. Don’t worry about the slow mail service; checks dated for 2006 will be credited to that year. Please know that your contributions will be put to new and exciting research that will expedite finding the cause and, hopefully, the cure for fibromyalgia.

Kindest regards,

Kristin Thorson

Two Year Financial Recap

AFSA began raising money for research in March of 1994, and as of June 30, 2006, we have raised $1,746,456 and funded 30 projects on FMS/CFS. We continue to be an all-volunteer organization with no major overhead expenses (we receive all in-kind services free from Fibromyalgia Network). AFSA operates this way because we understand that you want your generous donations to go to research, not administrative expenses. Our financial summary for the past two years (July 1, 2004 to June 30, 2006) has been combined for ease of presentation and appears in the table below.

Ordinarily, AFSA strives to maintain a fund balance between $80,000 and $100,000—enough to ensure that any new and exciting proposal submitted to AFSA can be awarded. However, last year we had a larger-than-normal balance due to the enormous generosity of Dyrna Hastings, who put AFSA in her will. It is sad to lose a person with fibromyalgia, but her desire to see that more research is conducted on FMS has led to the development of our new sleep research initiative.

We are proud of our finances and will gladly send United States residents our IRS-990 report. All we ask is that you mail us a self-addressed, stamped envelope (9"x12" size) with $4.60 postage so that we can keep expenses to a minimum. AFSA is picky about the projects it funds. We don't fund behavioral studies or "do-it-yourself approaches," and all proposals must be budget-conscious. Your charitable contributions are definitely needed to help us continue with our research-funding mission.

Financial Summary for July 1, 2004 to June 30, 2006
Revenue Expenses
Research Grants:
Interest & Other:
Note Cards:
Operating Expense:
Total Revenue:
Total Expenses:

Projects Funded in 2006

  • Establishing a Fibromyalgia Tissue Donation Program for Studying Human Chronic Pain States
  • Alterations in COMT Gene Contribute to Pain Susceptibility in FMS
    Part 2- Comparison of large patient/control population in Mexico Versus Spain
  • CFS - Role of Sleep Disturbance and Exercise on Symptoms and Cytokine Production

Visit our Projects Funded section for detailed descriptions.

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The American Fibromyalgia Syndrome Association, Inc. (AFSA)
PO Box 32698, Tucson, AZ 85751 • Phone: (520) 733-1570 • Fax: (520) 290-5550
Federal Tax I.D. 77-0355224 • Copyright © 1998-2011

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