Board of Directors Makes Plans to Add New Members to Assure Continuing Vision for the Foundation
After nearly 14 years of passionate service to patients and others affected by cutaneous lymphoma, Judy Jones, Founder of the Cutaneous Lymphoma Foundation (CLF), has stepped away from daily operations and from her role as President of the Board of Directors. Ms. Jones will remain in service to the Foundation as President Emeritus. In this capacity, she will provide recommendations into key Foundation advocacy and research initiatives designed to benefit patients. The Board of Directors will also continue to seek her expert counsel and support on key issues affecting the Foundation. Ms. Jones will also continue providing support to patients and caregivers through the CTCL-MF online support group and maintain her connections to patients and supporters through her Foundation email address: .
“Thirteen years ago, the Cutaneous Lymphoma Foundation was founded to provide information and support to patients about their disease”, said Judy Jones, founder and immediate past president of the Board of Directors. “Over the years, it has not only accomplished this, but has become a major player involved in advocacy, research and the worldwide cutaneous lymphoma community. With a good solid base in place, I can now step down and let others take the Foundation to even greater heights in the future.”
After her diagnosis with cutaneous T-cell lymphoma in 1990, Ms. Jones realized how little information and support there was for people diagnosed with this disease. Her quest to find answers for herself led her to think of ways in which she could be of service to the thousands of people affected by cutaneous lymphoma but who might be in the very same predicament she and her family found themselves. In 1996, she launched the CTCL-MF listserv, which began as a very early email-based social network for patients and caregivers, and it has grown into a global source of patient support and information overseen by Judy.
“We are extremely fortunate to continue to have Judy as a resource as we take the Foundation into its new phase of growth,” said Jennifer Viano, CEO of the Foundation. “We all have some very big responsibilities to fill, but Judy’s love, passion and commitment for this organization has set a standard of patient support and advocacy which my staff and I are dedicated to maintaining and even exceeding.” Ms. Viano assumed the role of CEO in April 2010 in an effort to begin transitioning Ms. Jones’ operational responsibilities.
Soon after Ms. Jones began the CTCL-MF listserv, she met Stuart Lessin, M.D., a dermatologist practicing in Philadelphia (and current CLF Medical Advisory Board Chairman), and Judith Shea, wife of a patient who created the Lee Allen Cohen Memorial Fund to support patients diagnosed with mycosis fungoides, a form of cutaneous lymphoma. Together, these visionary leaders formed the Mycosis Fungoides Foundation in 1998. In 2005, to more accurately reflect the scope of the Foundation’s services, the Mycosis Fungoides Foundation was renamed the Cutaneous Lymphoma Foundation.
“The needs and rights of the thousands of people worldwide afflicted with cutaneous lymphoma have had the uncommon energy and representation of Judy Jones,” said Michael W. Young, the Foundation’s new Board President. “No single person has so effectively and passionately worked to find better treatments for cutaneous lymphoma, better access to care, and more productive research than Judy. In the over ten years I have worked at her side, whether on the Board of Directors, with the pharmaceutical industry, in Washington, DC, or at dermatology and oncology/hematology conferences around the globe, her light has been our beacon. I look forward to her continued guidance as President Emeritus and to knowing her family gets to enjoy more time with her now.”
Ms. Jones’ vision coupled with her dedicated work throughout the years has resulted in extraordinary growth in vital areas of the Foundation including programs and services, advocacy, awareness, and research. In particular, Ms. Jones has forged key strategic alliances with the medical community at the American Academy of Dermatology (AAD), the Society for Investigative Dermatology (SID), the United States Cutaneous Lymphoma Consortium (USCLC), the International Society for Cutaneous Lymphomas (ISCL), the European Organisation for Research and Treatment of Cancer (EORTC), the Dermatology Nurses’ Association and with aligned patient advocacy groups such as the Coalition of Skin Diseases, Lymphoma Research Foundation, the Lymphoma Coalition, the Canadian Skin Patient Alliance, and the Genetic Alliance.
In an effort to continue building upon Ms. Jones’ vision for the Foundation, the Board of Directors is actively seeking new leadership for the CLF Board and invites interested individuals to contact the Foundation at 248.644.9014 or .
About the Cutaneous Lymphoma Foundation
The Cutaneous Lymphoma Foundation is an independent, nonprofit patient advocacy organization whose mission is to support every person with cutaneous lymphoma by promoting awareness and education, advancing patient care, and facilitating research. The Foundation was founded in 1998 and it is the only organization worldwide that offers comprehensive programs and services that provide information, resources and support to people affected by cutaneous lymphoma. The Foundation currently serves people from 67 countries who access our organization for assistance and support. For more information, please visit www.clfoundation.org or contact the Foundation at (248) 644-9014 or .
About Cutaneous Lymphomas
Cutaneous lymphomas are cancers of lymphocytes (white blood cells) that primarily involve the skin. Classification is based on lymphocyte type: B-lymphocytes (B-cell) or T-lymphocytes (T-cell). Cutaneous T-cell lymphoma (CTCL) is the most common type of cutaneous lymphoma that typically presents with red, scaly patches or thickened plaques of skin that often mimic eczema or chronic dermatitis. Progression from limited skin involvement is variable and may be accompa¬nied by tumor formation, ulceration and exfoliation, complicated by itching and infections. Advanced stages are defined by involvement of lymph nodes, peripheral blood, and internal organs.
Cutaneous lymphomas affect thousands of individuals worldwide. CTCL affects over 30,000 in the United States and Canada. The incidence of CTCL is increasing in the US with approximately 3,000 new cases being diagnosed annually.