March - April 1999
Awareness Day: Lobby Days are here again!
This is always an exciting time of year for the CFIDS community. Information packets
are being prepared,
members of local and national media are being contacted and letter writing campaigns are being planned.
Why? May 12th, CFIDS Awareness Day, is just around the corner! Marking its seventh year, International
CFIDS Awareness Day is just that--a day to increase awareness about an illness which affects over 500,000
people in the United States.
How it began
The first CFIDS Awareness Day was held on May 12, 1993.
This date was
chosen because of its significance as Florence Nightingaleís birthday. Nightingale was bedridden with
a disease resembling CFIDS when she founded the International Red Cross. Organized by Tom Hennessy, president
of RESCIND, Awareness Day events were held worldwide in an effort to focus attention for a single day
on CFIDS and those suffering from it, thereby increasing the impact of the efforts of patients and CFIDS
organizations to educate the general public, members of legislative bodies, the media and health-care
professionals. Letters were written; phone calls and visits were made to local and national representatives.
The message was beginning to be heard and understood--CFIDS was a debilitating illness which had become
a serious national public health and economic issue.
May 12, 1994, marked the first-ever
Lobby Day for CFIDS advocates in Washington, D.C. A 28-member group led by Kim Kenney, Executive Director
of The CFIDS Association of America, and Tom Sheridan, a professional lobbyist hired by the Association,
visited with key legislative staff members from 13 Congressional offices. These dedicated advocates spoke
about the Associationís specific appropriations requests for Fiscal Year 1995 and more importantly about
how this illness affected their lives. They put a face with the hundreds of letters, faxes and phone calls
that members of Congress were receiving about this illness.
The beat goes on
Each year the number of CFIDS Awareness Day activities increases as
more and more support groups and organizations team together. In 1998, the number of CFIDS advocates traveling
to Washington to participate in the Associationís Lobby Days was almost three times the number from 1994--which
is remarkable considering participants must pay their own expenses and most are thrown into a relapse
afterwards because of the challenging schedule. All agree that it is worth it, however, and are eager
to advocate again the following year. They understand they are helping to bring about change in the lives
of people with CFIDS. As one Lobby Day participant stated. "I learned how very important it is that we
all speak up and do our part, no matter how small."
Awareness Day activities by local support
groups have ranged from organizing information displays at malls, libraries and bookstores to hosting
nationally known CFIDS researchers and clinicians to speak with health-care professionals at local hospitals.
Support groups have had state and city Proclamations recognizing May 12 as CFIDS Awareness Day, and the
number of proclamations increases each year. Reporters and editors at local newspapers and radio and television
stations are contacted early each year by patients in a effort to spark coverage of this story from the
What can you do?
Whether or not you can join us in Washington, D.C.,
for Lobby Day
1999, you can play an active role in educating those who need to be educated about this illness. Send
letters, faxes or E-mail messages to your members of Congress, contact members of the local media or send
information to local physicians. The Association has a free information packet available to those who
are interested in participating and /or organizing May 12th events. It includes sample letters to members
of the media and members of Congress, information on requesting a CFIDS Awareness Day Proclamation and
first-hand accounts of past Lobby Day advocates. You can find that information on our web site, request
a packet by calling the Resource Line at 704/365-2343, or by writing to The CFIDS Association of America,
Attn: May 12th, PO Box 220398, Charlotte, NC 28222-0398.
The Association is here to guide
you, but your words speak louder than ours do. Make your voices heard today!
is in her ninth year of service to the Assocation. She is the operations manager and this year took
on new responsibilities as Support Network Services Director.
Let us know what you do
If you or your support group participates in
an Awareness Day
activity, let us know about it. Send a note and, if appropriate, a photograph.
Please join us!
Lobby Days 1999 will be held May 11 and 12 in our nationís capital. Mandatory
training for all participants is set for Tuesday, May 11, with visits to members of Congress scheduled
for Wednesday, May 12. For information, write us at The CFIDS Association of America, Attn: Lobby Days,
PO Box 220398, Charlotte, NC 28222-0398, call the Resource Line at 704/365-2343 or send E-mail to firstname.lastname@example.org.
The information is also available on the Associationís web site. If you are interested in joining us,
we must hear from you by April 1.
Please note: Travel and lodging expenses are the responsibility of the participants.
If you're writing to Congress ...
Can you help by writing letters to your members of Congress? Here are some suggestions:
- Write three letters (if you can): one to each of your Senators and one to your Representative. If
you donít know the names of your members of Congress, call your local voter registration office or League
of Women Voters.
- Keep your letters short, preferably only one page, and be sure to write legibly. Include the following
points: Who you are, where you live, why you are concerned about CFIDS, and, most importantly, a request
for support of CFIDS-related provisions in the annual appropriations bills.
- Be factual and state how more federal spending on research could help you. But avoid emotional or
- Use the following addresses:
Senators: The Honorable (first and last
name), United States Senate, Washington, DC 20510. Dear Senator (last name):
The Honorable (first and last name), United States House of Representatives, Washington, DC 20515. Dear
Representative (last name):
- Send copies of your letters to The CFIDS Association of America, if possible.