Meeting the Challenges of Oral and Head and Neck Cancer: A Guide for Survivors and Caregivers

Nancy E. Leupold

Nancy E. Leupold is the President and Founder of Support for People with Oral and Head and Neck Cancer, Inc. (SPOHNC), a national 501(c)(3) non-profit organization dedicated to raising awareness and meeting the needs of oral and head and neck cancer patients, their families, and friends. An oral cancer survivor herself, Leupold experienced many of the same difficulties as other oral and head and neck cancer patients and looked for a self-help group where she could find support and information. However, no such group existed. Consequently, with the encouragement of her surgeon, Dr. David Wolk and his colleague, Dr. James J. Sciubba, she founded SPOHNC. Now more than seventeen years later, SPOHNC has more than sixty-five chapters throughout the United States offering information, support, and encouragement to oral and head and neck cancer patients.

In addition to her responsibilities as the President of SPOHNC, Leupold is the editor of the organization’s national newsletter, News from SPOHNC, which provides state of the art information to SPOHNC’s constituency. Leupold has served as a member of the Coordinating Panel of the National Oral Health Information Clearinghouse (NOHIC), a service of the National Institute of Dental and Craniofacial Research (NIDCR), and as a member of the Forum Planning Committee of the Patients Advocates Forum sponsored by the NIDCR. She has also served on the Board of Directors of the ENT-Nursing Foundation of the Society of Otorhinolaryngology-Head and Neck Nurses (SOHN).

As a patient advocate for oral and head and neck cancer patients, Leupold participates on the Patient Advocacy steering committee of the Radiation Therapy Oncology Group (RTOG) and is a member of the Head and Neck Cancer Committee of RTOG.

Through her affiliations with national organizations, Leupold has sought to raise awareness of oral and head and neck cancer as well as SPOHNC’s presence. Thus in June 2001, she introduced an oral and head and neck cancer awareness ribbon to the public. This ribbon has become the official symbol of oral and head and neck cancer awareness and circulates widely in the United States and Canada.

In May of 2002, Leupold was awarded the American Head and Neck Society’s prestigious Presidential Citation “in recognition of her extraordinary concern for the well being of all people living with head and neck cancer.” As the president and founder of Support for People with Oral and Head and Neck Cancer (SPOHNC) Leupold “has proven that one person with vision and determination can improve the lives of many.”

Leupold is a graduate of Oberlin College with a Masters Degree from Long Island University. She has been married to her husband, Karl, for more than forty-five years and is the proud mother of three daughters and grandmother of six grandchildren. She resides in Locust Valley, Long Island, New York.

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James Sciubba

Dr. Sciubba has served as a full Professor in the Departments of Otolaryngology-Head and Neck Surgery, Pathology and Dermatology at the Johns Hopkins School of Medicine. He has over thirty-five years of experience with oral and head and neck cancer patients as a clinician and has published extensively in the areas of oral cancer, oral and salivary gland diseases, and jawbone pathology. He is currently in part-time private practice in Oral Medicine and Oral Pathology in the Baltimore community and is an active consultant at the Milton J. Dance Head and Neck Cancer Center located at the Greater Baltimore Medical Center, where a very active program exists in the comprehensive management and rehabilitation of oral and head and neck cancer patients.

Dr. Sciubba has extensive experience in the diagnosis and management of a broad scope of oral, jawbone, and salivary diseases. He remains active as an editor, associate editor, and reviewer of several journals including Oral Oncology, the Compendium of Continuing Dental Education, the Journal of Dental Research / Critical Reviews in Oral Biology and Medicine and Grand Rounds in Oral and Systemic Medicine. He is an active reviewer for many journals, some of which include Oral Diseases, Head and Neck, Archives of Otolaryngology, Laryngoscope, International Journal of Oral and Maxillofacial Surgery and Journal of Oral and Maxillofacial Surgery. He served as the Oral Pathology editor of “Triple O” for six years, and was Associate Editor of the Journal of Oral Pathology and Medicine for thirteen years.

He has authored or co-authored several books and over 200 peer reviewed papers, abstracts, and chapters, and has lectured extensively throughout the US, Central America, Europe, and Asia.

Dr. Sciubba is presently Vice President of Support for People with Oral and Head and Neck Cancer (SPOHNC) and was instrumental in the founding of this organization in 1991.

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