Message from the Director News Story

Message from the Director

This year marks a milestone as we celebrate 30 years of Neurofibromatosis (NF) research and medical care at Washington University. Over this period, we have witnessed the dramatic expansion of both our clinical and research programs, with the addition of new initiatives, laboratories, and patient care providers. The dedication of our team members has culminated in the establishment of one of the world’s largest and most comprehensive centers focused on improving the lives of people with NF.

Advancing NF Clinical Care

This year, we welcomed a new adult NF neurologist, Dr. Christopher Ray, to our team. Dr. Ray joins adult neuro-oncologist, Dr. Omar Butt, and adult oncologist, Dr. Angela Hirbe, in providing outstanding care for adults with NF1 and Schwannomatosis. Their addition anchors our developing adolescent/young adult transition program, which aims to assist our teenagers as they move from St. Louis Children’s Hospital to Barnes Jewish Hospital. In an effort to provide education and consultative services for physicians worldwide, together with Drs. Mohamed Abdelbaki, Director of Pediatric Neuro-Oncology, and Margaret Shatara at St. Louis Children’s Hospital, we have expanded our virtual international NF Tumor Board to nearly 40 institutions spanning over 25 different countries.

Advancing NF Research

In the laboratory, there were also many exciting advances. Dr. Corina Anastasaki was able to develop humanized models of NF1-associated low-grade brain tumors, surmounting a significant barrier in the field. Leveraging her advance, she has established patient-specific (personalized) brain tumors in mice using a small amount of material from patient surgery or biopsy. Additionally, Dr. Angela Hirbe and her team discovered a combination treatment that shrinks malignant peripheral nerve sheath tumors in mice, which she hopes to translate into a clinical trial for these deadly cancers in people with NF1.

Advancing Community Engagement

Maddy Scherr, our NF Center Coordinator, developed several new therapy programs and educational events for our families, including Camp NF and NF Family Day. She has also continued our strong partnerships with the Missouri Botanical Garden, Schnucks Markets, Jazz St. Louis, Ranken Jordan Pediatric Bridge Hospital, and the St. Louis Science Center to offer free community-based therapy events for children with NF1.

On behalf of everyone at the Washington University NF Center, we want to wish you and your family Happy Holidays.

David H. Gutmann, MD, PhD