CFIDS Association president and CEO K. Kimberly McCleary

From the Desk of Kim McCleary

March 2009

Dear Friend,
A year ago, we announced the ambitious Campaign to Accelerate CFS Research with its one-year fundraising goal of $1 million. By August, our supporters had enabled us to exceed that goal. And in November we announced funding for six innovative research projects. This news was distributed by more than 225 international media outlets. In January, the six teams of funded investigators met to synchronize their studies and launch the first formal CFS research network. You can read more about two of the investigators in this month’s edition. A midterm investigators meeting at the prestigious Cold Spring Harbor Laboratories promises to further maximize the synergy of these gifted scientists. We are actively leading this network and connecting the dots to other research. I have never been more hopeful about a specific CFS research initiative than I am today.

We’ve also looked to the change in Washington, D.C., as a positive force in our mission to conquer CFS. Last week, Dr. Suzanne Vernon and I briefed Dr. Wanda Jones, a senior Department of Health and Human Services leader given responsibility for CFS, about CFS research and the community’s needs. We were also active on Capitol Hill, providing updates to staff of key members of Congress. With all the challenges our nation currently faces, an era of “tough love” is being ushered in by those who propose funding laws. But the status quo is simply not good enough and we’re challenging Congress and the health agencies to do much more.

To position these programs as top priorities, we have had to give up some other activities. In the past six months, the world has changed literally and figuratively, on every front including the CFS horizon. The weak economy has taken a toll on the Association’s donors and we’ve had to make some difficult choices to conserve precious resources and protect vital programs that don’t exist elsewhere. We’re disappointed about contracting some services, but we’re not defeated. In fact, we’re energized by the opportunity to focus more intensely on a limited number of programs. We believe the Association will be stronger and more potent in its work looking ahead, and you have clearly told us you want to see accelerated progress.

The CFIDS Chronicle, our quarterly magazine for patients distributed as a membership benefit, will be one of the things that changes to accommodate a tighter focus and present fiscal realities.

“To accelerate progress toward accurate diagnosis and effective treatment of CFS by directly supporting research studies; facilitating collaboration among investigators; and advocating for increased investment in CFS research by public, private and commercial institutions.” Purpose statement of the CFIDS Association of America as adopted by the Board of Directors, November 5, 2008

To reduce printing and postage expenses, we will be refocusing the content, size and frequency of future issues. You will continue to receive CFIDSLink and we've just created a profile and cause on Facebook to communicate with supporters there. Please help us better understand how you use the Link and other online communications tools by responding to the second in a series of reader surveys.

We are confident that this new focused purpose (at right) and other changes will yield inspiring progress. We hope we can count on your continued interest and support.

Kim McCleary
President & CEO
March 4, 2009

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