About the Cutaneous Lymphoma Foundation
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The Cutaneous Lymphoma Foundation is an independent, nonprofit
patient advocacy organization dedicated to supporting every person with
cutaneous lymphoma by promoting awareness and education, advancing
patient care, and facilitating research. We exist to make sure that each
person with cutaneous lymphoma gets the best care possible.
The Cutaneous Lymphoma Foundation is the only organization
worldwide providing comprehensive programs and services for patients,
caregivers, medical professionals and others affected by cutaneous
lymphoma.
History
The Cutaneous Lymphoma Foundation was founded in 1998 by three
visionary leaders: Judy Jones, Dr. Stuart Lessin, and Judith Shea. Each
played a vital role in establishing and building the organization.
When Judy Jones was diagnosed with cutaneous T-cell lymphoma
(CTCL) in 1990, she was frustrated by the lack of information available
and wondered how other people were coping with a disease about which
they knew nothing. In 1996, she created and went online with the CTCL-
MF Listserv, an online support group, which grew fast as the Internet
burgeoned and people became computer-savvy.
Meanwhile, Judith Shea’s husband, Lee Allen Cohen, was diagnosed with
Sézary syndrome in 1994 and passed away in 1996. 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 support to others with CTCL diseases.
Mr. Cohen’s physician was Dr. Stuart Lessin, a dermatologist treating
CTCL patients in Philadelphia. Judith met with him several times to
discuss ways to reach her goal. After receiving information about the
CTCL-MF Listserv from one of his patients, Dr. Lessin called Judy Jones
and suggested that she consider starting a foundation. Remembering
About the
Cutaneous Lymphoma Foundation
