CFIDS

A little more than two years ago, a task force formed by members of our Board sought a new means to reach out to patients around the country and bring them in contact with CFS experts and one another. Out of that task force was born the Education & Empowerment Seminar Series. We held our fifth meeting in the series on March 10 in New Brunswick, New Jersey.

Part of the successful formula involves partnering with a local organization, and this time was no exception. We were thrilled to work with the dedicated Board members and volunteers of the NJ CFS Association who joined their 10th annual spring conference with our event.

Each half-day program features CFS authorities from outside the region who speak on a range of topics. For the New Jersey event, we combined an update on the national public awareness campaign, presentations by patients Brian Bernard and Jackie Neiderle, a research update from IACFS president Dr. Nancy Klimas, and clinical perspectives from Dr. Alan Pocinki. More than 150 patients, caregivers and friends were treated to an informative program that hopefully met the goals of the series—to educate and empower.

While Dr. Klimas’s news of research advances was inspiring, and Dr. Pocinki offered practical strategies for treating many CFS symptoms, the real star of the show was Brian Bernard, an incredibly articulate and insightful 13-year-old whose words demonstrated impressive maturity and courage. I remarked to the crowd that I want to be just like Brian when I grow up. You can read more about Brian and Jackie in an article that appeared on the front page of the March 8 Star-Ledger (New Jersey’s largest daily newspaper) and was reprinted four days later in the Chicago Tribune. This was just one more media coup generated by the public awareness campaign I was able to share with participants.

Our nickname for the seminar series is kNOw MORE CFS, meaning that until there is “NO MORE” CFS, we want those affected by it to “KNOW MORE” about it. I’ve only attended two of our five programs so far, thanks to the very capable senior staff we have leading the program, chief financial oficer Kris Hopkins and patient support & services coordinator Nova Bouknight. But after experiencing again the “jolt” of energy I feel meeting people who may be attending their first CFS seminar, or seeing friends from past Lobby Days or conferences, I don’t want to miss another one of these special events. It’s great to hear from those on the front lines, whether they’re talented experts like Dr. Klimas and Dr. Pocinki, newly diagnosed patients, long-timers or caring family members who’ve given up a Saturday afternoon to find out how they can be more supportive of a spouse, child or parent with CFS. Even after 16 years of service with the Association, I find the kNOw MORE meetings to be educational and empowering.

Our next event will take place on June 9 in Houston, Texas. And we promise that DVD recordings of selected past programs are in the works. We have a third 2007 program planned for the fall and will announce the date and location soon.

But before June rolls around or our kNOw MORE series comes to you, please plan to join us for a different kind of empowerment experience. Our 15th annual Lobby Day will be held on May 14-15 in Washington, DC Even if you’ve never visited Capitol Hill before, we promise to transform you into an expert advocate in just two short days! (Okay. They’re not short days, but they are transformative!) So far, a great mix of first-time participants and event alumni have registered, so whichever group you fall into, you’ll be in good company. Several people who attended the New Jersey seminar have followed through on promises to register. We hope you will meet them in Washington, DC, and get their impressions of our kNOw MORE program, in addition to what I’ve shared here!

The CFIDS Association of America is the largest and most active charitable organization dedicated to conquering chronic fatigue syndrome (CFS), which is also known as chronic fatigue and immune dysfunction syndrome (CFIDS). Through your donations, the CFIDS Association leads national efforts in CFS education, public policy and research.

To support the CFIDS Association’s research, education and advocacy efforts, click here.