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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Acerca de Kennedy Krieger Institute:
Kennedy Krieger Institute, una organización sin fines de lucro reconocida internacionalmente que se encuentra en el área metropolitana de Baltimore-Washington, D.C., transforma la vida de más de 30,000 personas por año con terapias de bienestar, salud del comportamiento y servicios médicos para pacientes hospitalizados y ambulatorios; servicios comunitarios y en el hogar; programas en escuelas; capacitación y educación para profesionales, y defensa. Kennedy Krieger ofrece una gran variedad de servicios para niños, adolescentes y adultos con enfermedades, trastornos y lesiones que afectan el sistema nervioso, con diferentes niveles de gravedad. El Instituto reúne a un equipo de investigadores que contribuyen a la comprensión de cómo se desarrollan los trastornos y que, además, son pioneros en nuevas intervenciones y métodos de diagnóstico temprano, prevención y tratamiento. Visite KennedyKrieger.org para obtener más información acerca de Kennedy Krieger.
