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Cutaneous Lymphoma Founda­tion

Your Global Partner for Cutaneous Lymphoma Support

by Susan Thornton

Photo by Cancer Type

The Cutaneous Lymphoma Founda­tion, a nonprofit patient advocacy organization, strives to support each person with cutaneous lymphoma by promoting awareness and education, advancing patient care, and facilitating research. Cutaneous lymphoma is a rare form of non-Hodgkin lymphoma that develops in the skin. Cutaneous lymphomas are divided into two major groups: cutaneous T-cell lymphoma and cutaneous B-cell lymphoma.

The organization was born out of frus­tration by cutaneous T-cell lymphoma survivor Judy Jones. She organized an online support group in 1995 and led the Foundation for the first 13 years of its existence. Today, the organization strives to make sure each person cop­ing with cutaneous lymphoma receives the best care possible and to increase knowledge and understanding about cutaneous lymphoma around the world.

The CLF is committed to supporting every person with cutaneous lymphoma through its ever-expanding programs and services.

Author of Article photo

Susan Thornton

The Foundation’s cornerstone programs are in-person, regional forums for survivors and their loved ones. These educational events feature expert speakers who provide informa­tion about cutaneous lymphoma and its treatment options, as well as survivors who share their journeys. Because the disease is rare, many cutaneous lymphoma survi­vors have never met or connected with anyone else with the disease. Meeting others and sharing fears and challenges inspires hope and provides comfort to these survivors, letting them know they are not alone.

The CLF is a daily lifeline that plays a vital role in answering questions, offering tips for managing symptoms, locating treatment centers, and providing one-on-one emotional support for people with cutaneous lymphoma and their caregivers. Updates, new research, advances in the field, and the Foundation’s activities are shared through its educational forums, newsletter, and var­ious publications, including A Patient’s Guide to Understanding Cutaneous Lymphoma, which is a comprehensive booklet about the disease.

Research is a key component of the CLF’s programs. Collaborating with medical and scientific investigators, professional societies, and research or­ganizations, the CLF supports research through its CLARIONS Research Awards Program, specifically funding cutaneous lymphoma research.

The CLF is committed to supporting every person with cutaneous lymphoma through its ever-expanding programs and services.

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Susan Thornton is CEO of the Cutaneous Lymphoma Foundation and a cutaneous lymphoma survivor.

For more information about the Cutaneous Lymphoma Foundation, visit CLFoundation.org or call (248) 644-9014.

This article was published in Coping® with Cancer magazine, July/August 2013.