Support for People with Oral and Head and Neck Cancer


Support for People with Oral and Head and Neck Cancer

Head and Neck Cancer

Head and Neck Cancer is the term given to a variety of malignant tumors that may occur in the head and neck region, namely the oral cavity, the pharynx (throat) paranasal sinuses and nasal cavity, the larynx, and salivary glands as well as lesions of the skin of the face and neck and the cervical lymph nodes.

The American Cancer Society estimates that there are more than 60,000 Americans diagnosed with head and neck cancer each year, excluding superficial skin cancers, but including cancer of the larynx and thyroid. Although the percentage of oral and head and neck cancer patients in the United States is only about 5% of all cancers diagnosed, the importance of this disease is heightened by the fact that functional problems and aesthetic differences are commonly associated with this type of cancer and its treatment.

Our History

There are presently more than half a million survivors of oral and head and neck cancer living in the United States. Unfortunately, many survivors of this disease continue to have side effects from treatment and may look for someone to help them cope with the physical problems as well as the psychosocial problems concerning quality of life. Based on the size of the survivor population, there is a definite need for an organization such as SPOHNC.

Nancy Leupold, an oral cancer survivor, was one of those survivors who was looking for support more than 25 years ago. When she began searching for information following her diagnosis, she found there was very little literature to be had. Nancy was discouraged, frustrated and angry. Even though her family and friends were supportive, she felt very much alone with little information to encourage her. She needed to speak with someone who “had walked in my shoes.”

Until 1991, there were few support groups specifically for oral and head and neck cancer patients in the U.S. Survivors found that coping with oral and head and neck cancer could be extremely difficult. Not only could the diagnosis be life-threatening, but many patients as a result of the disease and its treatment had to also endure alterations in facial and neck appearance and dental problems, as well as alterations in speech, sight, smell, chewing, swallowing and taste perception. Survivors and their families needed a support group in which they could share their experiences and problems and help one another.

In 1991, with the encouragement of David P. Wolk, MD a head and neck surgeon and James J. Sciubba, DMD, PhD, Director of Dental Care at Long Island Jewish Medical Center on Long Island, NY, Nancy Leupold founded Support for People with Oral and Head and Neck Cancer, Inc. (SPOHNC).

SPOHNC, a not-for-profit 501 (c) (3) organization, has become a vital component of the healing process for head and neck cancer patients. It has had an enormous positive impact on meeting the psychosocial needs of patients as well as preserving, restoring, and promoting physical and emotional health. A support organization, such as SPOHNC, can also be the foundation for patient and family education and awareness.

Raising awareness of oral and head and neck cancer is an important part of SPOHNC’s mission. SPOHNC’s Chapters and additional volunteers help to raise awareness through many events, which include oral cancer screenings, educational fairs, tasting events, and move to music classes.

SPOHNC has developed a network of relationships with health care providers throughout the United States who specialize in oral, head and neck cancer. SPOHNC’s Medical Advisory Board consists of distinguished head and neck physicians treating patients at the top comprehensive cancer institutions.

We hope that you will find the information and educational materials on our web site of help during your journey. Please remember, you are not alone. Many have “walked in your shoes” and SPOHNC is here to assist you.

Caring and Compassion

Caring and Compassion

About Our Founder

Don’t Underestimate the Power of Support
Because Together, WE Heal

Nancy Leupold

Squamous Cell Carcinoma (Floor of the Mouth)

No one likes going to the dentist, but I’m thankful I did. In April 1990 I was visiting a new dentist for a routine examination when he discovered a suspicious lesion on the floor of my mouth. He referred me to an oral surgeon who performed a biopsy that led to my Stage I squamous cell carcinoma diagnosis. I was petrified.

Our Board of Directors


James Sciubba, DMD, PhD
Walter E. Boehmler
Gail Fass


Mary Ann Caputo
Executive Director
Dorothy Gold
David Goldenberg
Eugene N. Myers
MD, FACS, FRCS Edin (Hon)
Karen Ulmer

SPOHNC Medical Advisory Board

David M. Brizel, MD

Duke University Medical Center

Robert Ferris, MD, PhD

University of Pittsburgh

Karrie Zampini Robinson, LCSW

Fighting Chance, Sag Harbor, NY

Patrick Byrne, MD, MBA

Cleveland Clinic

Bonnie Martin-Harris, PhD,CCC-SLP

Northwestern University

David L. Schwartz, MD

The Univ. of Tennessee Hlth. Sci. Ctr.

Allen M. Chen, MD

University of California, Irvine

David Myssiorek, MD, FACS

BronxCare Center

Everett E. Vokes, MD

University of Chicago Medical Center

Amy Y. Chen, MD, MPH, FACS, FACE

Emory University School of Medicine

Randal S. Weber, MD, FACS

MD Anderson Cancer Center

David W. Eisele, MD, FACS

Johns Hopkins Univ. School of Medicine

Kristen B. Pytynia, MD, MPH

MD Anderson Cancer Center

Dan Zandberg, MD

University of Pittsburgh

Our Community Corporate Partners