CFIDS Association president and CEO K. Kimberly McCleary

From the Desk of K. Kimberly McCleary

June 2007

This year at Lobby Day training, we asked all the advocates to apply one star sticker to their name badge for each year they had participated in Lobby Day (see picture at right). For about half the group, that meant one star, being Lobby Day first-timers. Quite a few people had two or three stars. Others had four, five or six.

Lobby Day participants sported badges that reflected how many Lobby Days they’ve attended.

One, Rick Baldwin, had nine. We used this device to help folks recognize the experienced advocates in the group, both during training and on the Hill the next day when questions might arise about our message or navigating the huge, busy buildings. We also used the stars to acknowledge the individuals who have made Lobby Day a priority—for their energy, finances, vacation days from work, time away from family—year after year. It was a small token of appreciation for their dedication and the inspiration they give others.

This year’s group was the largest ever, 80 advocates strong. We also conducted the largest number of meetings with congressional offices—94 in one day. We made one single “ask” in each of those offices, a different tactic from years past when we had as many as three different requests, depending on the congressional committee assignments of the person with whom we were meeting. Advocates liked the streamlined request and pared down information packets designed to help “close the credibility gap”—this year’s theme.

We carried a letter written to NIH Director Elias Zerhouni and sponsored by the Senate Majority Leader, Senator Harry Reid of Nevada, and two House members, Representative Jan Schakowsky of the 9th district of Illinois and Representative Sue Myrick of North Carolina’s 9th district (my Congresswoman). We asked the other members of Congress we met with to “sign on” to this letter, which requests that Dr. Zerhouni use new authority granted by Congress in the 2006 NIH Reform Act to make CFS a higher research priority.

A Lobby Day delegation prepares for its meetings on Capitol Hill. Left to right are Elly Brosius, Richard Melia, PhD, Yuliya Dobrydneva, PhD, Frances Peterson and Jennifer Phillips.

On Lobby Day and in follow-up calls made by advocates over the past two weeks, we’ve generated 20 signatures to the letter, and now a “Dear Colleague” letter from the sponsors asks all members of Congress to sign on. You can echo this request by sending your representative and senators an e-mail using the Grassroots Action Center alert at http://capwiz.com/cfids/issues/alert/?alertid=9753346&type=CO. Letters sent will also boost our totals for the 4th annual Virtual Lobby Day, already nearing the 6,000 mark.

We will keep you posted as to who signs the letter in support of making CFS a higher research priority at the National Institutes of Health, and we’ll let you know how Dr. Zerhouni responds to this direction. Maybe we’ll have reason to give some lawmakers and public health officials gold stars, just like the advocates who’ve already earned theirs.

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