Lobby Day a success
For the 10th year in a row, chronic fatigue and immune
dysfunction syndrome
(CFIDS) advocates have met with members of Congress and their aides to explain the nature of the illness
and its impact on patients, their families and their communities. They also spoke about how Congress can
help strengthen federal efforts to research and respond to the illness.
The June 21 Lobby Day event attracted 55 advocates from 19 states and the District of
Columbia. Many
were first-time participants in the annual event. Some came out of curiosity, to see how the process works,
others to gain some sense of control over the illness that has stolen so much from their lives. All left
feeling empowered by the experience.
At a half-day training session held June 20, advocates engaged in an educational--and
humorous--adaptation
of a popular game show, "Who Wants to be a Lobbyist?" Working in state and regional delegations, they
practiced and honed delivery of a compelling message. They prepared for the rigors of conducting 73 meetings
and organized logistics. Most importantly, they gained confidence in their skills as volunteer lobbyists.
The purpose of Lobby Day is to personalize the illness and demonstrate the human toll
it takes.
It is also to articulate the Association's requests for increased research funding by federal agencies
and
greater accountability. Putting dozens of people on Capitol Hill for a day also helps to raise visibility
for CFIDS--advocates wearing identical name badges and carrying identical tote bags filled with green
folders become recognizable, leading to elevator and cafeteria conversations about the illness. Staffers
and other Hill visitors relate having heard about CFIDS in the news or through family members.
Follow-up to Lobby Day is as important as the actual meetings with lawmakers. Draft
letters
of support are now circulating to congressmen and senators who said they would back the Association's
requests. When signed, these letters will be sent to the appropriations committee chairmen in both houses,
and
to Secretary of Health and Human Services Tommy Thompson. We'll share results in our next issue and on
our
Web site.
Planning for next year's event begins right away. If you have an interest in participating,
join our
C-ACT program to get advance notice of 2002 Lobby Day dates, as well as other
opportunities to engage in advocacy.
Congressional champions sought
For many years, CFIDS was fortunate to have
a staunch supporter
in Rep. John E. Porter (R-Ill.), who led the committee that makes funding decisions for federal health
and research programs. Rep. Porter retired in January, leaving a sizable void in the small stable of CFIDS
champions on Capitol Hill, now led by Sen. Harry Reid (D-Nev.).
Working with The Sheridan Group, the Association has targeted a group of 10 representatives
as possible
additions to the group of supportive members of Congress (see below). Grassroots organizing meetings in
those congressional districts have taken place or are being planned. Intensified media efforts to raise
awareness about CFIDS in those communities can help, since members pay attention to news coverage in their
districts.
The targeted districts include:
Ralph Regula (R) Akron/Canton, Ohio. New chairman of the House
Appropriations
Subcommittee on Labor-Health and Human Services and Education (L-HHS).
Nita Lowey (D) Harrison, N.Y. Serves on the House Appropriations
Subcommittee on L-HHS, and is the new chairman of the Democratic Congressional
Campaign Committee.
Ernie Istook (R) Oklahoma City, Okla. Serves on the House Appropriations
Subcommittee on L-HHS.
Dave Obey (D) Wausau, Wis. Ranking member of the House Appropriations
Com-mittee and the Appropriations Subcommittee on L-HHS.
Rosa DeLauro (D) New Haven, Conn. Serves on the House Appropriations
Sub-committee on L-HHS, and the Subcommittee on Agriculture.
Nancy Pelosi (D) San Francisco, Calif. Serves on the House Appropriations
Subcommittee on L-HHS.
Patrick Kennedy (D) Providence, R.I. Serves on the House Appropriations
Subcommittee on L-HHS.
Henry Waxman (D) Los Angeles, Calif. Serves on the House Energy
and Commerce
Committee s Subcommittee on Health and Environment.
Jesse Jackson Jr. (D) Chicago, Ill. Serves on the House Appropriations
Subcommittee on L-HHS.
Jim Greenwood (R) Doylestown, Pa. Serves on the House Energy
and Commerce
Committee and is chairman of the Subcommittee on Oversight and
Investigation.
If you live in or near one of the target Congressional districts and would like to become
involved,
please contact the Association at 704-364-0466 or by e-mail at advocacy@cfids.org.
Many Thanks to the 2001 Lobby Day Participants:
Arizona:
Shirley Clarke
California:
Elizabeth Hood-Lockhart Gloria Nelson
Colorado:
Brett Holaday
District of Columbia:
John Ginsberg
Delaware:
Rick Baldwin
Florida:
Wendle Broussard
Georgia:
Gloria Jacobs
Iowa:
Christine Gaffey
Illinois:
Sharon Greenspan
Patrick Holaday
Massachusetts:
Zev Donnelly
Matthew Felzani
Pat Golemme
Marie Haines
Sheila
Statlender
Diane Turner
Maryland:
Lauren Bean
Cheri Borsky
The Rev. Bernard Hillenbrand
Toni Marshall
Ann
McFerron
Barbara Sabur
Michigan:
David Boone
Sherry Boone
Lisa Guzylak
North Carolina:
Clarence Johnson
New Hampshire:
Eric Bussey
Erinna Bowman
New Jersey:
John McCarroll
Jacqueline Niederle
Ted Nilson
Lon Smith
Jon
Sterling
New York:
Patricia Feely
Jay Glaser
Suzanne Glaser
Christina Gombar
Eileen
Holderman
Christine Hughes
Sandy Kazlow
Joseph Lane
Kathryn Murphy
Lenore Robins
Suellen
Tritt
Ohio:
Ryan Sarni
Pennsylvania:
Allison Baldwin
Patti
Schmidt
Texas:
Brenda Conway
Virginia:
Elly Brosius
Naomi Edelson
Shirley Langridge
Beth Levine
Ruth
Pfeiffer
Rebecca Whittington
