In January, CFIDS Buyers Club President and independent fund-raiser Richard Carson presented a check for $23,000 to the non-profit CFIDS Association of America in Charlotte, North Carolina. Accepting the donation was Association President Marc Iverson, who is also founder and publisher of The CFIDS Chronicle.
The meeting culminated a successful joint effort by the CFIDS Association and the patient owned and operated CFIDS Buyers Club to raise $250,000 for CFIDS research. Both organizations spent hundreds of volunteer hours soliciting funds to reach the goal. In the “matching grant fund-raiser,” Mr. Iverson and Mr. Carson privately raised $125,000 which was then used to match funds donated by CFIDS patients, to a total of $250,000. Funds are allocated to immunological, virological, epidemiological and clinical research, as well as to the Association’s Patient Advocacy Program. Support also allows CFIDS’ Washington lobbyist, Tom Sheridan, to continue his pursuit of securing appropriate government funding, which many feel is inadequate.
Of the more than one million dollars raised by the non-profit CFIDS Association of America in 1992, Richard Carson, a CFIDS patient and former support group leader and his Buyers Club were responsible for approximately $200,000. “That’s what we’re here for,” said Carson. “The CFIDS Buyers Club was created for two purposes. One is to make nutritional supplements that are frequently recommended by leading CFIDS researchers available to patients at discount prices. The other, more important purpose, is to use all our resources to raise funds for research. This includes contributing a substantial amount of our own revenues.: In 1992,m the CFIDS Buyers Club itself donated over $25,000.
“The nice thing about giving money through the Association,” Carson continued, “is that their Scientific Advisory Committee (SAC) judiciously determines which research projects most deserve funding. When we channel money to the Association, we know it’s going where it’s most needed.” Among the researchers whose work is supported by funds provided by the CFIDS Buyers Club are preeminent researchers including Drs. Paul Cheney, Waiter Gunn [formerly in charge of the Centers for Disease Control (CDC) CFIDS Tracking Project], Elaine DeFreitas, Nancy Klimas and Sidney Grossberg.
Carson points to the success of the CFIDS Buyers Club with obvious pride. “The success of our Buyers Club has been overwhelming because we’re in tune with the needs of the patients; we listen and respond,” he said. “We want to support patients in any way possible.” The Buyers Club offers a wide selection of nutritional supplements at discount prices, some up to 60% below retail. “You can’t beat it. We pass on savings that result from the collective buying power of all our members,” Carson added. “But the thing I’m the most proud of in this whole endeavor is that we contribute so much of our revenues to CFIDS research.”
(This article was originally published in HealthWatch, Summer 1993.)