From The Desk of Kim McCleary

On April 16 the Association launched a new feature on its web site, theGrassroots Action Center. Thanks to the response from CFIDSLink subscribers like you, in the first week over 1,000 letters were sent to members of Congress requesting more federal funds for CFIDS research. The second Action Alert!, sent a week later, generated more than 2,000 letters to editorial pages of newspapers across the county. Our third Alert!, currently active, and the one you’ll receive on Friday target the nation’s top public health officials. So far, working together we’ve sent them 5,738 letters about CFIDS research and education. The final Alert! of this introductory campaign will hit your inbox on May 12, CFIDS Awareness Day.

We’re very enthusiastic about the extra force the Grassroots Action Center brings to our advocacy efforts. For years we’ve looked for ways to enable CFIDS advocates to participate in activities that will expand awareness, research and access to better care. With this tool, we use technology to make taking action quick and effective. The Center gives the CFIDS community a way to demonstrate its size and its might. With strategic guidance from The Sheridan Group, our lobbyists since 1992, we’ll use the Center’s many features to strengthen our presence and communicate more forcefully.

While the power of the Center comes through our collective use, it’s also a great resource for individuals, on any day, at any time. Get to know the members of Congress who represent you. Monitor legislation on any topic. Learn more about candidates for state and federal office. Inform local media of support group activities or share your CFIDS story with them. Spend a few minutes becoming familiar with the user-friendly site. We’ll also highlight specific features in future Alerts! to showcase its versatility.

We have been monitoring the way in which advocates are using our Alerts! and ready-made text to communicate with thought leaders in government and media. We’re working hard to make the process as easy as possible and to accurately reflect the issues of greatest concern to those who live with CFIDS. It’s been an educational process for us; even after 13 years with the Association I am constantly learning more about the plurality of opinion within the CFIDS community and the different ways people articulate their priorities. We appreciate hearing from you and will incorporate ideas and respond to concerns with future efforts.

The Grassroots Action Center, made possible through a grant from a family foundation, holds great potential to boost our advocacy and awareness efforts, but it won’t have any impact unless you use it. Please respond to the next Action Alert! and ask a friend to do so, too. Engage in CFIDS advocacy and make a difference for yourself and others.

K. Kimberly (Kenney) McCleary
President & CEO
The CFIDS Association of America

Working to conquer chronic fatigue and immune dysfunction syndrome