Diagnosed at 5 with stage 4 neuroblastoma, cancer of the adrenal glands, Bobby Menges had lived with cancer for most of his life. And as he aged through his treatment, he longed for private areas appropriate for his age, spaces where he could do his schoolwork, have visitors, or simply relax, away from the distractions of much younger children who were also patients in the pediatric cancer units.
Menges — an outgoing, well-liked young man known for his musical talent and energetic support of many causes — recognized the need for such spaces for seriously ill patients who, like himself, were transitioning into adulthood. And though he initiated efforts to bring his ideas to fruition, he did not survive to see them. He died on Sept. 8, 2017, a 19-year-old sophomore at Duke University.
Later that year, Bobby’s family — his parents, Peter and Liz, and three older siblings, Andrew, Jake and Emily — established the I’m Not Done Yet Foundation to continue Bobby’s legacy of altruism and optimism.
Named among a dozen other graduates in Newsday’s 2015 “Extraordinary Seniors,” the Garden City teen was on the wrestling team in high school, started a rock band with friends, composed an experimental suite of songs based on the Iliad and raised money for medical research; in 2014 alone he raised $95,300 for the Leukemia and Lymphoma Society's Man and Woman of the Year Campaign. After graduating from high school, he attended Duke for two years.
"I had a lot of rough things go on in my childhood . . . instead of wallowing in pity, I took those experiences and turned them into a positive," Bobby told Newsday.
"It changed my mentality," he said. "I don't like to let days go by when I'm unproductive. I feel like I always have to be doing something because I understand that life is short, and you have to use everything up."
The I'm Not Done Yet foundation, based in Garden City and whose nonprofit status is pending, has pledged nearly a million dollars for the creation of adolescent and young adult programs in medical facilities to meet the changing needs of patients as they become teenagers and young adults.
“The foundation is committed to serving the adolescent, young adult population,” said Peter Menges, 56, senior vice president of a hospitality company in Orlando, Florida. “This is a gap that Bobby recognized in his care, and he realized there was not a lot of focus on services for this population. Our work is designed to continue what he started . . . to build on his work. Until he died, he was still giving; that’s why we like the name ‘I’m Not Done Yet.’ ”
In the fall of 2017, The Cancer Center for Kids at NYU Winthrop Hospital in Mineola received a $235,000 grant from the foundation to develop a so-called AYA space. It was at the Mineola hospital that Bobby Menges received most of his treatment for cancer.
The hospital, which currently serves about 150 cancer patients from infancy to their mid-20s, is renovating an area on the fourth floor of its outpatient clinic for AYA use. It will house “different things that interest them, lounge space, entertainment, a variety of things, depending on what the interests of the patients are that day,” said Dr. Mark Weinblatt, director of NYU Winthrop’s Cancer Center for Kids.
“It’s the kind of thing he would want to do for others,” Weinblatt said, referring to Bobby. “We have some older patients who have different needs and, since many spend a large part of the day here getting treatments, we wanted to customize something for that group.”
Bobby’s mother, Liz, a longtime community volunteer, said the improvements will make the outpatient clinic more inviting. “If you go for treatment all day for five days in a row having chemo, the rooms are too small for parents and a friend,” said Liz, 56. “Also, you don’t want to be in the [treatment] room for eight hours; it’s depressing.”
Bobby’s idea, she said, “was to have somewhere to do math, a place to relax, where they could sit and not be overrun with little kids. Bobby was involved in the discussions about where to put it and what it would look like.”
To expand awareness of the unique requirements of adolescents and young adults during treatment, the foundation has also committed $500,000 over five years to the Hospital for Special Surgery in Manhattan.
Initially, the Manhattan hospital has launched a research project to evaluate the “changing psychosocial and emotional needs” of children and adolescents at different ages “so we understand [their] needs as they grow and change . . . so we can provide the best health care to the whole patient, making sure the future is better than the present,” said Dr. S. Robert Rozbruch, an orthopedic surgeon and chief of the hospital’s Limb Lengthening and Complex Reconstruction Service.
Bobby Menges received treatment over 10 years at the hospital to lengthen and realign his left leg, which was fractured and deformed in a skiing accident when he was 8, leaving it several inches shorter than his right leg.
“Although HSS will be the catalyst and epicenter of the research, our goal is to see the findings and best practices adopted throughout the U.S., and even worldwide,” Peter Menges said.
The hospital — which has an outpatient center in Uniondale — received $50,000 from the foundation to launch the Bobby Menges Memorial Hospital for Special Surgery Limb Deformity Course. The plan is to offer the course, which teaches techniques for treating limb deformity and limb lengthening, yearly in February.
“He was a very special boy,” said Dr. Rozbruch, who treated Bobby at the hospital. “He had an inner strength and inner spirit that was very impressive. He had been through a lot, but he handled it very well. He was very strong and courageous and determined.”
Bobby Menges’ great-uncle, Carl Menges, an East Hampton resident and lifetime trustee of the Hospital for Special Surgery, was among the foundation’s major donors, having gifted $200,000. He said the hospital’s work will honor his great-nephew’s “deep concern for young people like himself facing complex medical conditions throughout childhood and young adulthood.”
The foundation also used a $150,000 donation from Bobby’s fraternity, Pi Kappa Alpha, to establish the Teen and Young Adult Oncology program, an AYA program, at the Cancer Institute at Duke University Hospital. Patients 15 to 29 and their parents receive support, beginning with a cancer diagnosis, during treatment and after. The program offers specialized medical care and counseling, and it fosters peer relationships in the medical center and the community.
“He helped get it off the ground,” Liz said, referring to Bobby’s role. “We wanted to participate in a hospital where Bobby got treatment; they took such good care of him. We’d like to continue our $150,000 contribution yearly. We’d like that one to grow. We want to come up with things we can transfer to other hospitals; spread this information around to other places. We could use this as a model.”
Bobby Menges was treated at the Duke University Hospital while he was a student, pursuing a double major in math and music. He would have graduated in May.
The I’m Not Done Yet Foundation’s initial $150,000 grant also supports Bobby’s Coaches, a mentorship program at Duke University Hospital in which cancer patients developing into young adulthood and their parents discuss their future with the aid of young cancer patients serving as mentors.
“It helps patients navigate the health care system successfully, encourages parents to take care of themselves and work successfully with their child,” said Dr. Gary Maslow, a pediatrician and child psychiatrist and assistant professor at Duke University School of Medicine.
Maslow noted that Bobby Menges volunteered in the Adolescents Transitioning to Leadership and Success, a program in which college students mentor high school students with health problems.
The foundation’s grant also supports an onco-fertility program at Duke University Hospital that enables young cancer patients to preserve their eggs and sperm for future parenthood, said Maslow, a former Port Washington resident.
To fund the foundation, the Menges family — for whom giving is “in our DNA” Peter said — are reaching out mainly to major donors, some of whom knew and are inspired by Bobby. Funding has also been generated through individual community members. Like Tony Hoyt, a former Long Island resident celebrating his 80th birthday who asked for donations to the foundation in lieu of flowers.
Bobby’s fraternity has raised about $150,000 over the past two years, with head-shaving fundraisers a part of its continuing giving.
Bobby’s brothers and sister have hosted a variety of fundraisers for the foundation: A biannual blood drive run by Jake, 23, a second-grade and special-education teacher in New Orleans who said his little brother was “a gift to the world in many ways”; a soccer clinic for second- through eighth-grade girls on Long Island hosted by Emily, 26, a professional soccer player who plays center defense with the Portland Thorns in Oregon and whose team has made donations to the foundation.
His brother Andrew, 28, a sales and marketing consultant and former Peace Corps volunteer in Morocco who lives in Ethiopia, said their work is rooted in Bobby’s example. “We’re all volunteering from a young age but none more so than Bobby. The only thing he complained about was being in a [hospital] room with cartoons on the wall and a clown walking around.”
After first being diagnosed with cancer at 5, Bobby had his second diagnosis at age 9. His third and final cancer diagnosis would come in 2016, when he was 18 and a sophomore at Duke. Ultimately, his body stopped responding to treatment.
“Bobby was the quintessential pebble in a pond,” his father said. “His spirit rippled across anything he did. Bobby lived every day of his life serving others. Hopefully we can continue as his spirit drives us. It’s a wonderful opportunity to add a whole new dimension to our life.”
CORRECTION: The Hospital for Special Surgery received $50,000 from the foundation to launch the Bobby Menges Memorial Hospital for Special Surgery Limb Deformity Course. The amount was incorrect in an earlier version of this story.
The I’m Not Done Yet Foundation helps adolescent and young adult patients with cancer and similar illnesses as they transition from pediatrics to teens. The foundation hosts many fundraisers throughout the year. For more information, visit imnotdoneyetfoundation.org.