Help make Lobby Day a nationwide effort!

Hurricane Isabel arrived in D.C. on September 18, the same day advocates were scheduled to be on Capitol Hill, closing the federal government and forcing the cancellation of The CFIDS Association of America's 12th annual Lobby Day. This was a major disappointment, particularly to those advocates who attended Lobby Day training on September 17.

In spite of Isabel's best efforts, we have not lost our chance to educate Members of Congress and staff about the need for greater federal resources to conquer CFIDS. Below are suggestions for contacting your Members of Congress to raise their awareness of CFIDS-quick, easy ways to make your voice heard. Personal contact from constituents can have a profound impact on a Member, helping them to recognize the importance of an issue and its resonance with voters.

So, how to turn lemons into lemonade? The Association recommends the following actions:

*Make an appointment to see your Representative and/or Senators when they are home. Senators will be home from October 3 – 13; Representatives will likely be home around Columbus Day weekend.

Contact district or state offices to inquire about the Member's schedule and to make an appointment. If the Member is unavailable, ask about meeting with staff. Staff in the district/state offices will likely give you more time than you would have on Capitol Hill and will pass along your concerns to the Member. If you do schedule a meeting, try to bring along a small group to demonstrate that this issue is important to many of the Member's constituents. Remember to follow up with staff after the meeting to keep CFIDS on their radar screen.

*Write a letter to your Representative and/or Senators. Share your story of living with CFIDS or having a family member with CFIDS.

Include the Association's requests, which can be found in the advocate packets distributed at the training session. If you were unable to attend the training or were not registered for Lobby Day, please contact the Association at for a copy of FY'04 congressional requests. Keep letters relatively brief and to the point. Letters should be sent directly to local offices to avoid the 4-week delivery delay on Capitol Hill.

*Send an email or call your Members' offices to share your concerns with them. See the bullet above and follow those guidelines. If you call the office, ask to speak to the person who handles health care issues for the Member. Be respectful of the staff member's time: you will likely have only a few minutes to speak with them, so use your time wisely. Ask about contacting them to follow up on the Association's requests.

A Member's Web site will have all relevant contact information. Visit and for links to all Members' sites. You can also use the two aforementioned Web sites to determine your congressional representatives.

Please take these suggestions for grassroots advocacy and put them into action. And please plan on coming to the Association's Lobby Day in 2004. We will be announcing those dates shortly.

Leah Moseley
Public Policy Coordinator
The CFIDS Association of America

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