University of Illinois Expands Lifespan NF Care

NF Midwest is pleased to share an important milestone for the neurofibromatosis (NF) community. Dr. Nikolas Mata-Machado and Dr. Stefania Maraka have been added to the NF Clinic Network, a designation by the Children’s Tumor Foundation. 

We here at NF Midwest are proud of the work that Dr. Mata-Machado and Dr. Maraka began years earlier. Both physicians have been caring for people with NF at the University of Illinois, building a model of care grounded in experience, collaboration, and an understanding of the lifelong needs of children and adults with NF. 

This milestone reflects years of collaboration between Drs. Mata-Machado and Maraka with NF Midwest and the NF community in the Chicago area. 

A Commitment to NF Care 

Dr. Mata-Machado joined the University of Illinois in 2018, bringing extensive experience in NF care. He completed a fellowship with Dr. James Tonsgard at the University of Chicago, a longtime and widely respected NF specialist. During and after his fellowship, Dr. Mata-Machado cared for individuals with NF at multiple institutions before establishing his practice at UIC. 

At the University of Illinois Chicago (UIC), Dr. Mata-Machado focuses on pediatric NF care, providing consistent, thoughtful support to families navigating complex, lifelong medical needs. 

“We are the only Center that accepts all patients, regardless of insurance type.” – Dr. Nikolas Mata-Machado

Expanding Adult NF Care 

Access to knowledgeable adult NF care has long been a gap in the healthcare system. When Dr. Mata-Machado joined UIC, his practice focused on children. Recognizing the need for continuity of care, NF Midwest encouraged the intentional expansion of adult NF services. 

At that time, Dr. Mata-Machado recruited Dr. Stefania Maraka to care specifically for adults with NF. Dr. Maraka received training under Dr. John Slopis (a renowned “NF Doctor”) at MD Anderson Cancer Center, where she completed her neuro-oncologist fellowship.

NF Midwest staff met with Dr. Maraka to share the lived experiences of adults with NF and the challenges they face in finding informed providers. Once her practice was established, NF Midwest has been steadily referring adults with NF to her care for many years. 

“Caring for adults with neurofibromatosis requires listening, collaboration, and continuity. It has been meaningful to work alongside colleagues and the NF community to help expand access to informed adult care.” –  Dr. Stefania Maraka 

Coordinated Care Within One Institution 

Today, the University of Illinois provides NF care for both children and adults: 

• Dr. Nikolas Mata-Machado – Pediatric NF care 

• Dr. Stefania Maraka – Adult NF care 

Although they practice separately, their shared academic setting allows for meaningful coordination. In some cases, parents with NF and their children with NF can be seen on the same day, helping reduce travel burden and support families managing NF across generations. 

As access to NF care continues to grow, NF Midwest remains committed to helping individuals and families understand their options and connect with knowledgeable providers —at every stage of life. 

Together, we continue moving toward a future where no one with NF has to fight alone. 

All NF Care in the Chicago Area 

The Chicago area now has multiple physicians experienced in caring for people with NF across childhood and adulthood. NF Midwest regularly refers individuals and families to the following providers based on age, location, and care needs: