A Center of Excellence and Hope for Neurofibromatosis Patients

A Center of Excellence and Hope for Neurofibromatosis Patients

“Dr. Robert Listernick, co-director of the Neurofibromatosis Clinic at Ann & Robert H. Lurie Children’s Hospital of Chicago, is often referred to by our team as an NF-ologist. In addition to his 34 years of dedicated care of children, adolescents, and young adults with NF1, he is also an avid researcher with contributions in over 41 NF1 scientific publications. He has been a mentor to me and an inspiration daily in my five years working with him in our NF1 clinic,” says Allison Goetsch, Genetic Counselor and Neurofibromatosis Clinic Coordinator.

On Sunday, April 7th, 2019 at Chicago’s 2nd annual NF Hope Concert, Dr. Listernick will receive the coveted 2019 Advocate of Hope Award. The NF Advocate of Hope award is presented annually to an outstanding individual who has significantly impacted the lives of children and adults with neurofibromatosis.  Dr. Listernick was humbled upon learning of his selection.

Photo credit: Amy Boyle Photography
Dr. Robert Listernick with patient Molly, 4 years old.

“I am touched and honored beyond words to have been thought of for this honor. The greatest privilege of my professional career has been my involvement with the NF community–the children, families and colleagues around the world. I have been so fortunate to work at Lurie Children’s with our incredible collection of caregivers.”

As background, NF1 is a genetic condition that affects approximately 1 in every 3000 individuals, with more than 100,000 Americans currently living with NF1. This is more common than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined. People with NF1 usually have birthmarks called café-au-lait spots and can develop benign (not cancerous) tumors anywhere in the body where nerves are present. Individuals with NF1 often have visible lumps or bumps in their skin. These usually do not cause any health problems. However, NF1 can also cause tumors to grow inside the body, which may lead to complications. Approximately 15% of children with NF1 develop an optic pathway glioma. Many of these tumors do not cause problems and do not require intervention. However, sometimes optic pathway gliomas can grow and lead to vision loss. Our goal is to treat the tumor and stop vision loss before it progresses.

Because of this, we follow children with NF1 yearly in our Neurofibromatosis Clinic. One of those patients, Rachel Campana, shared the impact Dr. Listernick has had on her life.

“Dr. Listernick was my NF doctor for over 20 years and helped me grow up comfortable in my own skin. Having NF is not easy, can be scary and the future is unknown. But the support I have felt my whole life from Dr. Listernick and his team has empowered me and taught me that I can do anything.”

And Dr. Listernick’s mentoring extends to staff as well.

“When I started my neuro-oncology fellowship training, I did not realize that Dr. Listernick would become such an integral part of my development as a physician. Since then, he’s been an unreplaceable mentor, staunch supporter and a safe place when I felt like my best has fallen short. His love of medicine is profound and contagious. I am not sure what I did to deserve the investment he’s had in me, but I am grateful for it,” said Natasha Pillay Smiley, MD, Neuro-Oncologist and a member of the Neurofibromatosis Clinic.

The NF Hope concerts were founded in 2011 in Las Vegas by former Jersey Boys star Jeff Leibow and his wife, Melody, after their daughter, Emma, was diagnosed with neurofibromatosis at nine months old. The NF Hope Concerts, which also have been performed in New York and Chicago as well as Las Vegas, donate 100% of the proceeds to the Neurofibromatosis Network to fund advocacy efforts. Jeff Leibow will emcee the April 7 concert in Metropolis Performance Arts Centre in Arlington Heights. The event promises to follow its electrifying tradition of bringing together local and national headliners for an evening of spectacular entertainment. For additional information and/or to purchase tickets, visit NFHopeCh19.givesmart.com or call 630.510.1115.

To schedule an appointment in the Neurofibromatosis Clinic at Lurie Children’s, please call the Division of Genetics at 312.227.6120.

For more information about NF1, see links below.

Lurie Children’s Neurofibromatosis Program

Neurofibromatosis Network

Children’s Tumor Foundation

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