Dr. Mary Zupanc awarded prestigious Arnold P. Gold Humanism in Medicine Award

Dr. Mary Zupanc has achieved many superlatives over her long career in medicine; accolades and awards have followed.  But the co-medical director of the CHOC Neuroscience Institute and UCI professor of pediatrics and neurology considers the Arnold P. Gold Foundation Humanism in Medicine Award her highest honor of all.

Dr. Mary Zupanc, co-medical director of the CHOC Neuroscience Institute

The Child Neurology Society (CNS) has announced that Dr. Zupanc will receive this special distinction at their annual meeting in October 2021.  She is only the eighth individual to be thus honored in the 50-year history of the society, which represents the nation’s pediatric neurology subspecialists.

The Humanism in Medicine Award will be presented to Dr. Zupanc — who specializes in childhood epilepsy — for practicing “extraordinary and ongoing humanism” throughout her medical career. Included in the criteria noted by her peers are:

  • Compassion and empathy in the delivery of patient care
  • Respect for patients, families and co-workers
  • Cultural sensitivity in working with patients and family members of diverse backgrounds
  • Effective, empathetic communication and listening skills
  • Understanding of patients’ need for interpretation of complex medical diagnoses and treatments
  • Comprehension and respect for the patient viewpoint
  • Sensitivity to patients’ psychological well-being and patients’ and families’ emotional concerns
  • Ability to instill trust and confidence

“You may be the greatest scientist in the world, but if you don’t have empathy and compassion for patients and families, you can’t advance the field of medicine,” says Dr. Zupanc. “To me, as a clinician bringing science to the bedside – this is the ultimate award.”

This award also has personal meaning and sentiment for Dr. Zupanc, because as a faculty member at Columbia University, she and Dr. Gold – the award’s namesake – became good friends.

“Dr. Gold was one of the kindest, gentlest, most intelligent child neurologists I’ve ever known,” she says.  “He had a real compassion for children, and we just hit it off.”

Dr. Gold, who died in 2018 at the age of 92, frequently complimented Dr. Zupanc: “He went out of his way to tell me that I had taught him some things about epilepsy that he didn’t know,” she says. “I was sure that couldn’t be the case, since he was senior to me, with such knowledge and wisdom. But he insisted, and that was the kind of person he was; always offering encouragement and making people feel special.”

A trailblazer for both women and the epilepsy subspecialty

Dr. Zupanc has received many accolades over the years, including being the first woman to graduate top of class from UCLA Medical School, and at a time when women were just beginning to be have more representation in medicine.  She was later named one of 10 “outstanding young women in America.”  She has garnered many teaching awards from medical students and residents, and continues to be listed among the best doctors in America.

Dr. Zupanc is board-certified in four different medical specialty areas: pediatrics, neurology, neurophysiology and epilepsy. Her primary mentor, Dr. Raymond Chun, encouraged her to return to her home state of Wisconsin and become a child neurologist. Dr. Zupanc initially hesitated, but ultimately agreed, thinking it would simply be a good learning opportunity from her mentor. While there, she learned that pediatric epilepsy didn’t have many treatment options aside from a handful of drugs. However, there was exciting innovation with pediatric epilepsy surgery just starting to be performed in young children. 

“Epilepsy surgery in children was in its infancy at this time, and people thought we were crazy,” Dr. Zupanc says. “The advances we’ve made since then are astonishing. We can do things we’d never dreamed of before.”

Now, she says, she feels like Sherlock Holmes when she works with a new patient. Each child is different, and a physician must determine how to best help them in terms of their specific situation – medically, socioeconomically, culturally and religiously. It’s imperative to partner with families, listen to them and come to an agreement, Dr. Zupanc says.

A legacy that goes beyond awards

Throughout her career, Dr. Zupanc has been very active in the CNS and the Child Neurology Foundation, a parent/provider advocacy group linked to the CNS. A handful of her other legacy accomplishments include her work in infantile spasms and epilepsy surgery; transitioning care of pediatric patients to adult care; and, most recently, chairing the CNS relative value unit (RVU) task force, resulting in a seminal article about physician workload, compensation and burnout.  

As a clinical professor in academic medicine, she has continued to teach medical students, residents, fellows and colleagues, as well as mentor young faculty, especially women.

“Fifty percent of medical school classes are now women, but there is still a glass ceiling in terms of being leaders in our field,” she says. “We’ve come a long way, but the progress is slow. Having diversity, inclusion and equity in medicine makes the field better and stronger.”

Dr. Zupanc was recruited to CHOC 10 years ago to build the neurology division. She now considers her greatest accomplishment to be CHOC’s designation as a Level 4 Epilepsy Center – the highest level of specialization – providing “complex forms of intensive neurodiagnostic monitoring; extensive medical, neuropsychological and psychosocial treatment; and complete evaluation for epilepsy surgery, including intracranial electrodes and a broad range of surgical procedures for epilepsy.”

Since arriving at CHOC, she has grown the pediatric neurology division from four physician subspecialists to the present 16, specializing in areas such as epilepsy, sleep disturbances, movement disorders, concussion, stroke and autism. This growth has resulted in the reorganization and consolidation of the neurology division with the neurosurgery division, becoming today’s CHOC Neuroscience Institute. 

In working at CHOC, Dr. Zupanc has found inspiration from helping families who believe they have no hope. When they arrive here, she says, some feel as though their lives are falling apart; their child may have difficult-to-control epilepsy or is struggling developmentally. The quality of care they receive from CHOC is transformative and changes their lives, she says.

Medical outreach, both nationally and internationally

To only give honor to Dr. Zupanc’s academic and scientific accomplishments would be to miss a great part of what her life has been about, as reflected by the Humanism in Medicine Award. Throughout her medical career, she has continually been involved in family and community outreach and advocacy; actively participated in family support groups; and developed outreach programs for underserved communities.

Her passion and advocacy have even reached beyond national borders. She was a member of the board of directors of Physicians for Social Responsibility, the American section of the International Physicians for the Prevention of Nuclear War (IPPNW), when the group was awarded the Nobel Peace Prize in 1985. In that role, she traveled with an American delegation to the Soviet Union and met with like-minded Soviet physicians to share ideas for pulling their nations back from the brink of nuclear disaster.

More recently, Dr. Zupanc traveled to India, Armenia and Vietnam on missions of teaching and providing medical care in areas where doctors are rare and medical specialties often non-existent. Back home, her passion is family-centered care, and she is a regular guest speaker at family support groups.

“My patients and their families have taught me so much,” Dr. Zupanc says. “They’ve taught me humility, how to truly listen, to be open-minded and that deeply caring for the patient and family reaps great rewards.”

“One of the wonderful things about child neurology,” she explains, “is that you often embark on a decades-long journey with families.” She still receives letters and cards from patients she treated 30 years ago. “You transform a child’s life and a family’s life. That’s what this profession is all about, and why it has always been more than a job for me. It’s a calling.”

Learn more about the CHOC Neuroscience Institute.

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The transition from child to adult care must start early with education, pediatric neurologist emphasizes

Navigating from child to young adult can be very challenging in the best of circumstances.

Add a chronic or rare medical condition to the journey, and the process can get very scary.

Teens with chronic conditions face a higher risk of non-adherence to taking their medication or even obtaining it when transitioning from a pediatric to adult primary care provider, medical experts say. And statistically, the chance of them having to be admitted into an ER or have surgery increases, as does the prospect of them dropping out of treatment – which could have fatal results.

Dr. Mary L. Zupanc, co-medical director of CHOC’s Neuroscience Institute and a pediatric neurologist who specializes in epilepsy and rare conditions, stressed in a recent webinar that she’s passionate about preventing patients transitioning to adult care from falling through the cracks.

Dr. Mary L. Zupanc, co-medical director of CHOC’s Neuroscience Institute

“We begin with introducing the concept of transitioning to adult care when our patients are 12 years old,” Dr. Zupanc said while speaking on a four-person panel hosted by Global Genes, an Aliso Viejo-based non-profit that advocates for the rare disease community.

The topic of the 50-minute discussion on Sept. 24, 2020 was “Navigating the Transition of Care for Young Adult Patients.”

In addition to her position at CHOC and as a faculty member at UC Irvine, Dr. Zupanc sits on the board of directors of the Child Neurology Foundation (CNF) in Minneapolis, Minn. On its website, the CNF details several resources about transitioning to adult care.

“We at CHOC have followed the CNF’s template to develop a formal transitioning program here,” Dr. Zupanc said.

Starting the conversation with families when a patient is 12 years old may seem too early, Dr. Zupanc said. But transitioning is a process that doesn’t have a one-size-fits-all solution, and it’s critical to start the discussion when patients are young.

The other panelists agreed. They were Dr. Leah Ratner, a fellow at Brigham and Women’s Hospital in Boston; Sneha Dave, 22, a student at Indiana University who since age 6 has lived with ulcerative colitis; and moderator Amy Ohmer, director of the International Children’s Advisory Network in Marietta, Ga., and the mother of two daughters, ages 17 and 19, who have chronic and rare conditions.

“I think it’s important to introduce the concept (of transitioning) early – to let the parents and patient know, ‘We’re not just going to throw you out,’” Dr. Zupanc said. “Rather, ‘We’re going to work with you so you can learn to self-manage your disease and your medications. And we’re going to go over your plan on a yearly or bi-annual basis.’”

Under the transitioning plan adopted by CHOC thanks to a grant, a healthcare transition program is initiated when patients turn 12 years of age.

Clinicians, social workers, and others continue to prepare their patients and their families for increased independence and management of their care, as well as to the adult model of care, Dr. Zupanc explained.

The actual transition to adult care varies from 18 to 22 years of age—often dependent on insurance—and ideally occurs in stages, as these young adults may have multiple subspecialists. Between the ages of 23 and 26 years, the young adults are integrated into adult care.

“It’s a partnership,” Dr. Zupanc said. “It takes a community.”

Sneha, the Indiana University student, said the transition must go slow because there are so many components to it, such as having to navigate health insurance.

“Young adults diagnosed with a condition at childhood tend not to be as prepared because their parents or guardians took care of everything and they had no ownership of their own care,” Sneha said.

When she was a freshman, Sneha founded the Health Advocacy Summit, which empowers young adults with chronic and rare diseases through advocacy events and programs. In August 2020, the organization hosted an international virtual summit.

“It’s a process,” Dr. Zupanc agreed of transitioning to adult care. “And I think it’s a process of self-empowerment. Most parents are used to taking care of everything. We try to empower our teenager and young adults as much as possible. Parents have to let go at some point, but it’s a process.”

The bulk of Dr. Zupanc’s patients have severe epilepsy that started in infancy. A high percentage also have intellectual disabilities.

“Sometimes they take a step forward and two steps back,” she said.

The path toward a successful transition to adult care begins with knowledge, she explained, followed by support, confidence and, finally, independence.

Dr. Zupanc noted that patients who leave CHOC are welcomed to stay in touch.

“As a pediatric provider for children with rare diseases,” she said, “I let my families and adolescents know that I have their backs and that I’m not going to let them fall into the abyss. If there are issues, I’m here to help them.”

November is epilepsy awareness month. To learn more about CHOC’s Comprehensive Epilepsy Program, click here.