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.