Together We Heal

In Memoriam
SPOHNC Loses a Legend…Nancy Edith Leupold

It is with heavy hearts and the deepest sadness, that we share with you the news of the passing of SPOHNC's Founder, Nancy Leupold. Nancy passed away on January 26th. She was 80 years young.

Nancy led a life of service in education, including primary school education and teaching hearing-impaired children. The majority of her career was spent at Mill Neck Manor School for the Deaf after earning her Master’s Degree in Speech-Language Pathology. Nancy was a dedicated mother, serving as a Brownie and Girl Scout leader for many years. She was also a talented seamstress, an accomplished pianist and she loved to dance.

Following her diagnosis and treatment for oral cancer in 1991 Nancy was shocked to find that there was no support for those seeking someone to connect with in dealing with the questions, worries and fears associated with the diagnosis and treatment of this devastating disease. She started SPOHNC with a laptop and an idea, in an office in her home, and began with one support group on Long Island.

Her tenacity, determination and endless hours of hard work and devotion enabled SPOHNC to grow to the more than 100 Chapter Support Groups that exist today, along with the National Survivor Volunteer Network of volunteers numbering more than 225 survivors and caregivers. Nancy also created and developed with James J. Sciubba, DMD, PhD, President of SPOHNC, the many publications that are welcomed by patients and their loved ones.

Fond friend and mentor to SPOHNC Executive Director, Mary Ann Caputo, Nancy will be remembered by her colleagues as an amazing woman, who led by example, always seeking new ideas and additional ways to support those who are affected by the diagnosis and treatment of oral, head and neck cancer. She was an inspiration to all who encountered her. Nancy dedicated over 25 years to SPOHNC hoping that in the near future research would bring better and improved treatments. Throughout the years Nancy was honored by many medical organizations and in 1992 received a letter of recognition from President and Mrs. George H. W. Bush for her many accomplishments and making a difference in the communities of this great nation.

Nancy is revered in the head and neck community for her vision and hard work. SPOHNC didn’t lose a legend – Nancy is “THE” legend. Her legacy will live on forever.

It's been said that the best prayer of all is one of gratitude, and today we all share in a prayer of thanks to Nancy E. Leupold, Founder of SPOHNC.

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.

The oral surgeon referred me to a head and neck surgeon—a profession I never-before knew existed. I was totally without knowledge of this disease and everything surrounding it. Fortunately, my surgeon explained a lot to me and my husband, which was very helpful.

My friends and family quickly learned that I had been treated for oral cancer, and they were very caring and willing to help in any way they could. However, few understood the psychological aspects of the disease, so it was difficult to discuss those with them. I really wanted to meet others who had gone through a similar experience.

At the time, there were support groups for a lot of things but not for head and neck cancer survivors. I talked to my surgeon about it, and he suggested that I start a group with his assistance. He also introduced me to the chairman of dental medicine at a local medical center, and these two men were instrumental in helping me start the first support group for head and neck cancer survivors. We called it Support for People with Oral, Head and Neck Cancer (SPOHNC).

I held the first meeting on September 10, 1991. Nine people, including me, showed up and sat in a circle. None of us knew each other, but we knew we had something in common. One by one we exchanged our stories and began to recognize similarities between them. Sharing our experiences was extremely therapeutic and by the end of the evening, nine strangers had become friends and we all felt a little less alone.

That meeting represented the start of the first SPOHNC support group. There are now over 100 SPOHNC support groups across the U.S. I facilitated that local support group for more than 15 years and it is one of the most rewarding and educational things I’ve ever done. However, SPOHNC is much more than support groups. Our organization is the only one of its kind in the United States. Whereas there was very little information about oral, head and neck cancer when I was diagnosed, SPOHNC now offers a great deal of information to the newly diagnosed, to survivors, and to their families and friends.

For the newly diagnosed patient, I highly recommend first finding out all you can about your disease, and then finding a local support group where you can meet with others who understand what you’re going through. You will likely gain new perspectives on handling the issues surrounding your cancer and also some friends along the way.

I still go for yearly checkups with my head and neck surgeon to make sure nothing has changed. This past year I had a sonogram of my thyroid and the year before I had biopsies of four nodules; fortunately, all were negative. While the fear of reoccurrence is still on my mind, I try not to think of what could be and instead plan for the future. My husband and I were fortunate to be with one another for over 51 years. I have three daughters, six grandchildren and an orange tabby cat named Cinnamon. Spending time with my family helps me keep things in perspective, and I look forward to each new day that God gives me.

Stay positive.