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RETURN
TO TABLE
OF CONTENTS
March - April
1999
Founder's Forum
A
dialogue with Association members
Dear Members,
It is always
gratifying when someone lets
you know that what you do is important to them. Such is the case with The CFIDS Chronicle. As
you might imagine, we're extremely proud of the development of the Chronicle over the years.
Since I announced in my last message that we would be re-evaluating the Chronicle's role in furthering
the Association's mission, several of you have written to remind us how vital this publication is to you.
For
example, Karen Henderson described the Chronicle as "our information kiosk that tells us of developments
in research and funding, lets us reach out to each other with helpful tips, and directs us to resources
we may not have known about." While the Chronicle is no longer the only comprehensive source
of information on CFIDS, Karen noted, "We need to keep in mind that not all PWCs have access to these
sources or the energy to find them."
Ronnee Barnett wrote to say the Reader's Forum and
other patient-to-patient sections give her "a much-needed feeling of reassurance and confirmation," reminding
her that she is not alone. Media Watch inspires her to write letters, while research coverage and book
reviews point the way to more information.
"I, for one, hope the journal will not change,"
she wrote.
Change is inevitable, however. Any organization that is unable to adapt and change
as the world around it changes will become increasingly less vital, less relevant, less able to achieve
its goals. Such is the case with The CFIDS Association of America. As we have done throughout our nearly
12 years of existence, we are in the process of adjusting our goals and fine-tuning our focus to be sure
we are leading rather than drifting with the current. We must be certain that our efforts are invested
in the most critical priorities of the CFIDS community. We must cause change rather than react to it.
One
of the first steps in that process was rewriting the Association's mission statement (see page 6). The
mission statement guides all our planning, both the long-range strategic planning led by the Board of
Directors and the annual operating plan developed by our professional staff. This simple but powerful
mission statement with its five-point action plan, adopted by the Board of Directors on Feb. 16, reflects
a number of key changes in priorities and focus. On the following page, Wilhelmina Jenkins, our Vice Chairman,
discusses how those changes will begin to affect our work this year.
Another important change
is taking place, and it, too, is an ongoing process. Just as we are re-examining the Chronicle
and the mission statement, the Board of Directors is re-examining its own role and responsibilities. In
the course of doing so over the past year, nine of our 23 board members have chosen to retire. Their reasons
have been as varied as their lives-one is undergoing an aggressive new medical treatment; another is struggling
to stay in college; several are facing career and family challenges that preclude their playing the kind
of leadership role that the Association needs at this time. We will miss each of them-Coco Crum, Heather
Frese, Bill Gareau, Ken Iverson, Maggie McKenzie, Rebecca Moore, Marion Nelson, Allison O'Neal and David
Patterson-and their important contributions. We hope that, as they are able, each will continue to share
his or her experience with the Association in some way. I know you join me, the Board and the staff in
wishing them much success.
I have a great deal of confidence as we move through this period
of change. We have dedicated leadership on the Board, and the Nominating Committee will do its part to
strengthen that even more. We have a strong and experienced staff committed to progress, and several dozen
volunteers now serve on advisory committees and task forces. We are positioning the Association to change-and
to make change.
As the Association moves forward, it must never lose touch with those for
whom it exists-you and our hundreds of thousands of fellow PWCs. As always, the staff and I want to know
what's important to you. A good place to start is with the Reader Survey.
Sincerely,
Marc M. Iverson
Chairman & Founder
Please send comments to me at the Association’s mail address and Fax number, or by E-mail to
chronicle@cfids.org.
Re-examining our mission:
Setting goals and finding the means to reach them
by
Wilhelmina Jenkins
Vice Chairman, The CFIDS Association of
America
I feel that we're all just being left to suffer with no end in sight. These
words, sent to
me in an E-mail from a close friend, reflect the isolation and despair felt by so many of us PWCs as we
struggle with this devastating illness, still so often misunderstood and trivialized by our doctors, families,
friends and the media. We share important information about our illness among ourselves in the Chronicle,
in support groups and on line, but often that information does not reach the public and the broader medical
community. This year, the Board of Directors of The CFIDS Association of America has made a commitment
to reach out beyond the PWC community with programs designed to promote public understanding and to expand
the recognition of CFIDS as a major, mainstream medical concern.
In order to spread the word
about CFIDS more widely, we plan to increase our efforts in two important areas-public relations and medical
education. Like you, I have longed for the day when every medical professional will be as knowledgeable
about CFIDS as he or she is about cancer or heart disease or diabetes. I want the tasteless jokes and
erroneous statements that still assault us in the media to be replaced by articles which tell the truth
about CFIDS. PWCs have called for action in these two critical areas, and this year the Association has
responded by making public relations and medical education top priorities.
Research has been
of central importance to the CFIDS Association since its formation. Over the years, the Association has
directly funded more than $3.3 million in CFIDS research. As a PWC and a former researcher, I have eagerly
followed the progress our dedicated researchers have made in understanding this complex illness. At the
same time, however, I have wished for a forum where experts in CFIDS could sit down with top researchers
from other fields and with bright, young scientists with fresh views to brainstorm new ideas and expand
our pool of researchers. This year, we have an exciting opportunity to create such forums in partnership
with scientists at major research institutions. We believe that this effort will result in improving the
quantity and quality of future CFIDS research and increasing the available funding for which our researchers
can apply. The creation of CFIDS research workshops will be the major thrust of the Association's research
effort in the coming year.
Most of the successful programs of the Association will remain
in place in the coming year. Our public policy program will build on the tremendous strides made last
year, from the whistle-blower revelations at CDC to the largest Lobby Day ever. These accomplishments
were possible only because of the consistent efforts and support of our membership-the heart of the CFIDS
Association. The Association is, and will remain, a membership-based organization in which every member
counts. Our primary source of information and exchange of ideas still will be The CFIDS Chronicle,
although the format may change to allow us to direct information to our most critical communication target-health-care
professionals-as well as to our membership.
As Vice Chairman of the Board of Directors, as
a person who has struggled with CFIDS for more than 16 years, and as a mother of a PWC, I am excited about
the programs planned for the coming year. I hope that you will be, too. Working together, we can enter
the year 2000 closer than ever before to reaching our common goal--conquering CFIDS.
The Mission of The CFIDS Association of America is to conquer CFIDS.
The Association works toward its Mission by:
- Building recognition of CFIDS as a serious, widespread
medical disorder;
- Securing a meaningful response to CFIDS from the
federal government;
- Stimulating high quality CFIDS research;
- Improving health-care providers’ abilities to detect,
diagnose and manage CFIDS; and
- Providing information to persons with CFIDS and enabling the CFIDS community to speak with a collective
voice.
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