CFIDS Association president and CEO K. Kimberly McCleary

From the Desk of Kim McCleary

January 2008

Eight in 2008

What’s new in the new year? Here’s information about eight things to look forward to in 2008, the Association’s 21st year of service to the CFS community:

1. Chairman Jennie Spotila: The Board of Directors is the backbone of every nonprofit organizations, and the CFIDS Association is certainly indebted to the leadership provided by the 80 individuals who have served as directors since our founding in 1987. This month, Jennie Spotila begins her first term as chairman of the Board, the fifth person elected to this post in our 20-year history. Before being disabled by CFS in 1994, Jennie studied literature and law and was a litigator in Philadelphia. She brings these experiences, a keen knowledge of the CFS community, a strong working understanding of the Association and diverse other talents and interests to her leadership role. Get to know Jennie and one of her turning points in the illness through her “Taking Steps” essay, shared with CFIDSLink subscribers in the December edition. You can learn more about other current members of the Board of Directors at http://www.cfids.org/about/board-of-directors.asp.

2. Defining Moments: Our special publication marking the CFS community’s history, Defining Moments: 20 Years Making CFS History, is at press and will be mailed to Association donors and members this month. This 61-page publication records highlights and lowlights, features perspectives from people you told us were important in shaping our shared history, and documents a detailed timeline of events in the world of CFS. Special “Defining Moments” essays from writers Laura Hillenbrand and Zachary Sklar continue the series begun in the fall Chronicle with pieces by Dorothy Wall and Floyd Skloot. (Read this month’s essay by writer Ruth Sloven.) Watch the postal mail for your copy of our special publication. If you’re not a current member or donor, make a donation now to be included on the mailing list. Here’s how.

3. Expanded Research Program: On November 7, 2007, we announced a new addition to our staff, scientific director Dr. Suzanne D. Vernon, and an expanded research program that will unfold in 2008. Dr. Vernon and a committee of our Board have been working together to shape this program and develop a request for proposals that will be issued early this spring. Dr. Vernon has also been vigorously reaching out to researchers in the field to introduce herself, establish collaborations and provide resources. We will keep Link readers informed about new research initiatives as they take shape. See our November 7 press release about Dr. Vernon and the program.

4. The “kNOw MORE CFS” Series Continues in Tampa: On April 26, the Association will host its eighth Education & Empowerment seminar in Tampa, Florida. We’re also working to develop CFS educational programs for area health care providers. Speakers, location and other details will follow as they are confirmed. For information about past “kNOw MORE CFS” programs, please visit http://www.cfids.org/community/conf-meetings-interest.asp.

5. Congressional Briefings: In this busy election year, we’ll reach members of Congress with the latest information about CFS by hosting briefings on Capitol Hill. We will work closely with congressional champions to invite a panel of CFS experts to discuss current research highlights and opportunities to shape funding requests and agency directives. The last congressional briefing on CFS was hosted by the Association in 1996. There will not be a Washington, D.C., Lobby Day in 2008, but we will conduct the fifth annual Virtual Lobby Day, as well as online seminars to sustain our tradition of engaging advocates in grassroots activities, including town hall meetings and campaign events. Stay in touch with us through the Association’s Grassroots Action Center listerv. Enroll today to receive advance notice of events and regular updates on issues of interest.

6. New Venues for “Faces of Chronic Fatigue Syndrome”: The CFS public awareness campaign continues as the stunning “Faces of CFS” tour reaches more visitors and generates media attention in Philadelphia, Portland, Phoenix, Tampa, San Antonio, Baltimore, Seattle, Oklahoma City and Macon (Georgia). Visit the photo exhibit area of the awareness campaign website for details, updated as specific venues and dates are confirmed.

7. Upgrades to Our Website: In 2007 nearly 1.48 million visitors sought and received information about CFS from our website, www.cfids.org. During 2008 we’ll be making upgrades to our site, making it an even more valuable resource and Internet destination. For now, find links to the latest content at http://www.cfids.org/about/whats-new.asp, a page we update regularly. You can also find past issues of the Link archived at http://www.cfids.org/archives/cfidslink.asp.

8. New Look for CFIDSLink: The CFIDSLink turns five this year, with plans for a facelift and broader distribution. Already one of the most widely read CFS publication in cyberspace or print, we’re planning to make the CFIDSLink even more attractive and helpful to those who rely on it for timely, accurate and reliable monthly summaries of the latest CFS research, community events and tips for living with CFS. Not receiving the CFIDSLink in your in-box? Sign up today.

This preview is just the beginning of what’s in store as the CFIDS Association “comes of age” this year. We look forward to sharing more news and details in every edition of the CFIDSLink throughout 2008.

With gratitude for your interest and support,

Kim McCleary
President & CEO
The CFIDS Association of America