BALTIMORE, May 1, 2025—Kennedy Krieger Institute has started a program to diagnose and treat pediatric patients with neurofibromatosis (NF), a series of rare genetic conditions that cause tumors to grow throughout the nervous system and potentially impact cognitive, bone, and vascular development.
Under the leadership of Dr. Stephanie Morris, the program serves patients ages 16 and under, focusing on improving developmental outcomes and quality of life, while ensuring seamless coordination with comprehensive medical services through the Johns Hopkins Comprehensive Neurofibromatosis Center (JHCNC).
As an expansion to JHCNC, Kennedy Krieger’s program provides pediatric care, including neurodevelopmental evaluation and management, genetic testing, physical therapy, occupational therapy, and other services, while the JHCNC remains the central hub for clinical care and research.
“Neurofibromatosis is often thought of as a tumor condition, but for many children it also affects learning, attention, behavior, and development,” said Dr. Morris, a pediatric neurologist who also serves as JHCNC Assistant Director for Pediatric Care. “This collaboration brings together Kennedy Krieger Institute’s expertise in neurodevelopment with Johns Hopkins’ strength in NF research and coordinated subspecialty clinical care.”
“This is a major step forward in how we care for children with NF,” said Dr. Jaishri Blakeley, Director, JHCNC. “By bringing together world-class expertise in neurodevelopment and NF medical surveillance and care, we are creating a truly comprehensive, lifelong model that addresses not only the medical needs of our patients, but also their cognitive, behavioral, and functional needs. Our shared goal is simple: to improve lives today while accelerating discoveries that will change the future for people living with NF.”
“This partnership highlights the opportunities to expand research focused on cognitive, behavioral and emotional wellness for children with NF” said Dr. Carlos Romo, JHCNC Associate Director for adult care.
Dr. Ali Fatemi, Kennedy Krieger’s chief medical officer, said the new program, “expands upon the expertise we have at Kennedy Krieger and allows us to better serve our patients with neurofibromatosis, while working toward research breakthroughs.”
The new Kennedy Krieger Pediatric NF Program has already begun accepting patients. To find out more, visit our website.
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About Kennedy Krieger Institute:
Kennedy Krieger Institute, an internationally known, nonprofit organization located in the greater Baltimore/Washington, D.C., region, transforms the lives of nearly 30,000 individuals a year through inpatient and outpatient medical, behavioral health and wellness therapies; home and community services; school-based programs; training and education for professionals; and advocacy. Kennedy Krieger provides a wide range of services for children, adolescents and adults with diseases, disorders and injuries that impact the nervous system, ranging from mild to severe. The Institute is home to a team of investigators who contribute to the understanding of how disorders develop, while at the same time pioneering new interventions and methods of early diagnosis, prevention and treatment. Visit KennedyKrieger.org for more information about Kennedy Krieger.
