The Mycosis Fungoides Foundation originated from one feeling -- frustration.
When Judy Jones was diagnosed with cutaneous T-cell lymphoma (CTCL) in 1990, she went from feeling that her world was falling apart to learning to live with the disease. Her search for information to help her with this journey turned quickly to frustration -- she had never heard of CTCL, knew no one else with CTCL, and could find no information. Judy wondered how other people were coping with a disease about which they knew nothing. In 1996, she created and went on-line with the CTCL information/support listserv. The listserv grew fast as the word got out, as the Internet increased in size and people became computer literate.
Meanwhile, Judith Shea's husband, Lee Allen Cohen, was diagnosed with Sézary syndrome in 1994 and passed away in 1996. Once again frustration abounded. Frustrated by the lack of information and support during her husband's illness, Judith created the Lee Allen Cohen Fund in his memory. Her goal was to find a way to use this legacy to provide information and support to others with CTCL diseases. Mr. Cohen's physician was Dr. Stuart Lessin, a dermatologist treating CTCL patients in Philadelphia, and Judith met with him several times to discuss ways to reach her goal.
In 1999 Dr. Lessin was also frustrated. He felt that a patient advocacy group could call attention to the needs for education and research in this field. After receiving information about the on-line CTCL information/support listserv from one of his patients, he called Judy Jones and suggested that she consider starting a foundation. Remembering Judith's goals, he also called her to discuss the idea of a foundation for MF patients. Dr. Lessin then suggested that the two "Judys" talk and consider attending the upcoming American Academy of Dermatology (AAD) meeting to assess the support of other physicians. During the AAD meeting, they met with the International Society of Cutaneous Lymphoma (ISCL) and other patient advocacy groups and determined that yes -- this foundation was needed.
Using the funds from the Lee Allen Cohen memorial as seed money, a foundation was created. Frustration found its purpose: The Mycosis Fungoides Foundation.
Our first newsletter focuses on who we are, and our history, mission and goals. Future issues will focus on information regarding treatment options and topics of interest to patients and physicians. Our goal is to provide information. Because this is a rare disease surrounded by many unanswered questions, we anticipate differing opinions. We hope to present objective information so that patients and physicians will be able to discuss individual cases and make informed decisions about treatment options. There is not "one best way" to treat this disease, and it is important for patients to rely on their personal physician's expertise. It is also important to understand what other physicians are prescribing so patients will understand the range of available options.