by Judy Jones, President, Mycosis Fungoides Foundation
Meetings, meetings, meetings...
This year has been filled with meetings. The Mycosis Fungoides Foundation was represented at the Dermatology Nurses Association Annual Convention, American Academy of Dermatology Annual Meeting, American Society of Clinical Oncologists and the Society for Investigative Dermatology Annual Meeting. We also attended a partnership workshop with the Coalition of Patient Advocates for Skin Disease Research and the American Academy of Dermatology, as well as National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Day, to lobby for increased research funding. Meetings give us the opportunity to be seen in the medical community as well as network with and determine the needs of physicians, nurses, and patients.
Thousands of informational pamphlets were sent to physicians' offices as well as made available at our exhibit booth for physicians to distribute to their patients.
An issue that continues to arise is the lack of accurate information in one place. An evolving project is providing updated treatment information on our web site, MFFoundation.org. We are in the process of researching, gathering information and working on the technical aspects. Watch for changes in our web site in the next couple of months.
I had the wonderful experience of attending a "Face-to-Face" meeting in Los Angeles this year. Being able to talk to other patients and their families lets you know that you arenÍt the only one dealing with this disease. It is my intent to set up face-to-face gatherings, as I travel to various conferences. If you are interested in setting one up in your area, let us know and we'll get you started.
Your support for our newsletter has been inspiring. Please take the time to join the Mycosis Fungoides Foundation if you have not already done so. For the first time, CTCL patients have started to build a sense of community. As a group, we are able to bring national attention to our disease and influence physicians, researchers and pharmaceutical companies to continue to work toward better treatment options and more understanding of the disease to discover a cure.