Home: Publications: Forum Archives: MFF Forum, edition 1
President's Message
by
Judy Jones, President, Mycosis Fungoides Foundation
Here it is ... the first
newsletter of the Mycosis Fungoides Foundation.
With gentle pushing, prodding
and never-ending "to do" lists, Judith Shea has partnered
with me to establish a solid base on which to build a viable, stable
organization. Visioning and strategic planning have been our focus
this year -- expanding possibilities, deciding where the foundation
needs to go, seeing a clear direction, and determining what is
standing in the way.
I see this stage of our
evolution as an opportunity to reflect on what is and is not working,
to determine where we want to go, and to see who wants to join
us on our journey. The foundation incorporates cutaneous T-cell
lymphomas (mycosis fungoides and Sézary syndrome are the
most common) as well as other related diseases. This issue highlights
one of these related diseases -- lymphomatoid papulosis.
I encourage you to read
about the volunteer opportunities available and identify your areas
of interest. I would like to match each member's areas of expertise
with volunteer tasks that will help the Mycosis Fungoides Foundation benefit
patients and their families. Those of us who have been diagnosed
with a disease that is out of our control can control how we choose
to deal with it. Becoming involved is one way. I felt that I was
powerless when I was first diagnosed and I chose to isolate myself.
It was only when I chose to reach out to others that my isolation
ended and my sense of control returned.
I am energized and optimistic
about the future. Our organization rests with people that have
a passion to accomplish our goals and meet the needs of patients
and physicians. Now that we have a voice, I encourage you to join
together to accomplish our objectives and secure the future of
the Mycosis Fungoides Foundation.