In the fall 2000 edition of NF News, the Children’s Tumor Foundation shared the story of an inspirational young man, Jeffery Meyer, and his battle against NF1. On June 23, 2010, Jeff passed away unexpectedly. The Foundation honors his memory and would like to share his life with our readers.
“What an inspiration!”
That’s the phrase most often used to describe Jeffrey Meyer due to his courage, his optimism, and his perseverance. Born in Teaneck, New Jersey, Jeff was a typical child in many ways; he loved to ride his bike, build with legos, and compete in various academic or athletic competitions. He was a Boy Scout and was active in his community. Where he was atypical, exceptional even, was in his dedication to others. As a child Jeff made Valentine’s Day cards for a nearby senior center and walked dogs for the Humane Society. He was very intelligent and by the age of six was reading Reader’s Digest to residents of a local senior community to raise funds for his school’s gifted program.
At a doctor’s visit at eight years old, café au lait spots were large enough that the diagnosis of neurofibromatosis type 1 (NF1) was made. In 1982, little was known about the disorder. The physician handed Jeff’s mother, Carolyn, a medical textbook that described NF as Elephant Man’s Disease. As we now know, this couldn’t be further from the truth. At 10 years old, Jeff injured his leg in a bicycle accident. Though a tumor was not found, Jeff was encouraged by his neurosurgeon to take up horseback riding to help repair nerve damage. In true Jeff style, he not only learned, he excelled, becoming an accomplished show jumper. Living a relatively unaffected life, Jeff continued to exceed expectations, participating in marathons and triathlons to raise funds for NF research. Also, beginning in middle school, he worked constantly to educate the community about neurofibromatosis and became a “big brother” to a young girl having difficulty dealing with NF. In addition, Jeff became more involved with the Children’s Tumor Foundation which helped him deal with NF in his own life.
While studying at the University of Florida, Jeff met Foundation board member, Dr. Peggy Wallace. Their friendship began at Shands Hospital where Jeff went for pre-op studies. Jeff was to have a tumor removed by Dr. Lind the next day and expressed an interest in donating tissue to research. Luckily, the plexiform neurofibroma was found to be benign. His tumor sample provided substantial material for research over a number of years that was used by Dr. Wallace and other researchers in the field. Over the next 15 years, Jeff had three more surgeries at Johns Hopkins Hospital in Maryland and each time made sure that tumor samples were sent to Dr. Wallace.
Dr. Wallace recalls Jeff as a bright individual, engaging in dynamic conversations. Their relationship continued over the years as Jeff completed his bachelor’s degree at the University of Florida. In 2001, Jeff happily volunteered to speak at one of Dr. Wallace’s genetics classes at the University. It is no easy task to speak about one’s medical condition, especially in front of 120 first-year medical students. Dr. Wallace recalls how the students and Jeff “hit it off,” sharing stories and making a memorable impression of how it is still possible to live the life you imagine.
Jeff soon earned his master’s degree from the University of Florida. During this period, he participated in several activities including volunteering with the local fire department as their public relations representative and arson photographer.
At the age of 32, Jeff began to lose function in his left leg. A malignant peripheral nerve sheath tumor (MPNST) – a rare but highly volatile manifestation of NF1 – was discovered in his hip and he was diagnosed with cancer. Refusing the radical treatment of a hemipelvectomy, an amputation of half of the pelvis and the leg on one side, Jeff asked his doctors to find an alternative treatment that would save his leg. Jeff resolved to beat cancer and cycled to fundraise for several cancer-related causes. He began training for a 24-hour bike ride known as the “24 Hours of Booty,” later joining the Ulman Cancer Fund’s organizing committee for the event.
Sadly, shortly before his second round of chemotherapy at Memorial Sloan-Kettering in New York City, Jeff passed away unexpectedly from a blood clot. Among his many accomplishments, Jeff was most proud of his athletic awards and his work with various volunteer fire departments. Despite his many achievements, Jeff’s primary focus was raising funds for medical research, increasing public awareness of NF and cancer, and encouraging people to live their best lives regardless of their circumstances. When asked to give the keynote address to the Johns Hopkins Survivors Symposium in 2010, he stated “It is important that you do things and see the places that make you happy, do things you’ve always wanted to do. Not because you are desperately trying to finish off some sort of bucket list, but because when you do those things, you are best equipped for the fight… Not only will that make a difference in your life, and your treatments, but it will make a difference in the lives of your loved ones.”
Jeff is best remembered for his generous spirit and inclination to “get it done.” His fellow firefighters recall Jeff’s willingness to help in any task, whether it was putting out a fire or cleaning the dishes. Jeff was also passionate about volunteer work, from helping at Habitat for Humanity, to donating blood, to participating in events for NF and cancer research. He was truly altruistic and never forgot a birthday or special occasion. When his mother, Carolyn, arrived at his apartment after he passed, she found presents set aside for her birthday and Christmas.
When asked what advice she would give to the NF community Carolyn reminds us, “When you have something that is precious, value every moment.” Jeff would certainly concur. In his keynote address he advised, “Survivorship is as much about the journey as it is the finish line. And how you proceed on that journey will affect everything in the present, and the future. So stay positive, stay realistic and, have the courage to take control of your life. It will make all the difference in the world.”
