The American Fibromyalgia Syndrome Association, Inc.

The American Fibromyalgia Syndrome Association

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Update - Organizational News
VOLUME 8, ISSUE 1 - AUGUST 2001

Organizational News and Activities

Patient-Funded FMS Projects Dominate Scientific Meetings

Within the last year, when it came to fibromyalgia syndrome research, AFSA-funded studies dominated the American College of Rheumatology (ACR) and the American Pain Society (APS) meetings. In a previous Update, we described the seven AFSA-funded studies that were presented at the October 2000 ACR meeting. These projects, funded by your donations, were deemed to be of the highest quality by the research community (click here to see read about all of AFSA projects). For instance, at the April 2001 APS meeting, AFSA-funded researcher Serge Marchand, Ph.D., was one of three speakers asked to present his preliminary data at the special FMS session. During the past seven years, AFSA has evolved into the most dominant charitable organization funding research on FMS ... and it couldn't happen without your generosity!

You might ask: What is the government's National Institutes of Health (NIH) doing about advancing FMS research? After years of doing nothing, they are finally funding some projects _ many of them by previously funded AFSA investigators who have a stronger foothold in the NIH door because of the preliminary data they acquired through their AFSA studies. Drs. Daniel Clauw, Leslie Crofford, Alice Larson, I. Jon Russell, Roland Staud, and Muhammad Yunus are all examples of just such researchers. Or, investigators are granted awards by AFSA to look into novel spin-off ideas of their currently funded studies by NIH, but the government didn't have the funds allocated for these additional FMS projects (the NIH has a very tight budget when it comes to FMS). As a result, AFSA has been able to sponsor complimentary (but not duplicating) projects to Drs. Laurence Bradley (twice on vital brain imaging studies), Luc Jasmin (just funded, click here for details), and Dan Wallace (who had an ongoing grant to look at cytokines in lupus, but not FMS).

AFSA's policy is "no great FMS study should go unfunded," and that means funding English-speaking and exceptionally qualified scientists outside of the United States as well. This would include Drs. Serge Marchand (Quebec, Canada), Harvey Moldofsky (Toronto, Canada), and Haiko Sprott (Zurich, Switzerland). Currently, these wonderful scientists are not only looking at their own government's biomedical funding resources, but they are also forming collaborative relationships with United States investigators to further FMS research.

What about highly competent researchers who would like to break into the field of FMS? AFSA is there to help jump-start their FMS careers. We've done this for Drs. Iris Bell (who just published her AFSA-funded study), Thomas Fasy (a two-part project, click here for details), Serge Marchand (a well-known back pain expert), Robert McMurray (a rheumatologist who has published on lupus), and John Stewart (a molecular biologist who is cloning a peptide that should relieve FMS pain ... a process that he has done for other diseases).

Naturally, AFSA is always happy to fund proven scientists in the field who are willing to perform much-needed drug trials, such as Drs. Robert Bennett (Ultram with dextromethorphan) and Don Goldenberg (clonazepam).

The point is, AFSA's 21 funded projects are clearly forming the foundation of FMS research. Our 22nd project has been approved (and money set aside), but we are just awaiting confirmation details from the collaborating institute.

It is truly sad that patient contributions to AFSA are so essential to the future of FMS research ... but that is the case. Your donations, small or large, fund well-developed, novel ideas and assist qualified new investigators wanting to move into this challenging field.

Your generosity forms the foundation of FMS research! Earlier this year we funded three new projects (click here for details) and this has nearly depleted AFSA's bank account. Yet, we are expecting several exciting new grant applications to be submitted at the end of August ... and we don't want excellent projects to fall through the cracks due to lack of funds.

Over 90% of your donations go directly to research—AFSA has no overhead expenses because it freely receives all in-kind services from a company operated by AFSA's president. AFSA is proud of the way that it has been able to operate financially (click here for financial details) and it is the ONLY charitable organization in the U.S. that is continually focused on funding research on FMS. Some organizations may say that they "encourage" or "promote" research, but none of these charities actually fund studies. This is why your generous donations to AFSA are so crucial.

Yes, it is terrible that patients who are ill and struggling to pay their medical bills also must be called upon to fund research on their own disease. But if FMS patients and their loved ones don't work to help AFSA seed novel ideas in the FMS field, there is no one else that you can count on to do this job. No one. Please contribute what you can today, and ask the healthier people around you to do the same!


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