At the Forefront of Neurofibromatosis Type 1 and Glioma Research

Patients with neurofibromatosis type 1 (NF1) are at increased risk for cancers, most commonly high-grade gliomas and malignant peripheral nerve sheath tumors. Through the expertise of neuro-oncologist Miriam Bornhorst, MD, Lurie Children’s has earned two prestigious designations from the Gilbert Family Foundation that are accelerating progress for patients with this incurable genetic condition. 

Lurie Children’s was named a Gilbert Family Foundation Glioma Research Center, one of only a select group of centers nationwide recognized for leadership in clinical trial enrollment and the development of new treatments for NF1-associated brain tumors and vision restoration. This designation ensures children have access to cutting-edge interventions not available at most hospitals. 

In addition, Lurie Children’s was chosen as the coordinating site for the first-ever NF Postmortem Donation Program, a groundbreaking effort to collect and study tumor tissue from patients who pass away from NF1-related cancers. Postmortem donation has allowed researchers to better understand why tumors form, why they don’t respond to treatment and sometimes can be used to test new therapies before they move to clinical trials. This program addresses a critical gap in research, understanding how tumors change after treatment, and provides families with the option to contribute to discoveries that could shape future therapies. 

Together, these designations position Lurie Children’s at the forefront of NF1 research, offering hope for better treatments and improved outcomes for young people with this condition.