A team approach to care

We understand that living with NF can be overwhelming and stressful for patients and their families.

Because so many parts of the body can be affected, our team collaborates with a variety of specialists who have experience treating NF:

Because each person’s NF is different, we strive to:

  • Tailor evaluations to make sure we understand how NF is affecting your child
  • Care for the whole person and provide support and resources to address all the ways NF affects your life

Family-centered care

We welcome — and encourage you — to be as involved as possible in your child’s care. You are your child’s best advocate and champion. Do not hesitate to contact us with questions or concerns, no matter how large or small.

Therapeutic and community support programs

We offer a multitude of programs that are designed to address the myriad of developmental and behavioral issues that affect children with NF1. These therapy programs are offered at no charge to families due to the generosity of the Doris and Donald Schnuck Fund for Children in Need and the St. Louis Children’s Hospital Foundation. For more information, please contact [email protected].

  • Music Heals (1 – 5 years): This music therapy program uses jazz music to address the social, motor and behavioral delays specific to each child.
  • Club NF (grades K – 8): Club NF is a free play-based therapy program for children with NF1. Therapists work with each child to improve gross and fine motor, attention and social skills.
  • Totally TEEN (13 – 18 years): Totally TEEN is a social and life skills program for teenagers living with NF1. During each session, teens have the opportunity to interact with peers dealing with similar challenges and begin developing their own sense of independence.
  • Camp NF (Grades K -8): Through outstanding community partners, like Acorn Children’s Therapy and The Song Society, children with NF1 in grades K-8 have the opportunity to work on various developmental skills in a fun and interactive environment over the summer. Hosted at a pediatric outpatient therapy clinic, occupational and physical therapists affiliated with the St. Louis Children’s Hospital, as well as music therapists with The Song Society, incorporate sensory swings, musical instruments, obstacle courses, motor activities, and social games, to ensure children have an incredible camp experience, while also learning.
  • NF Family Day (all ages): Once a year, the NF Center partners with an organization in the Greater St. Louis area to host a day of fun and learning for individuals with NF1 and their families. Past Family Days’s include the Missouri Botanical Garden and Grant’s Farm.

Clinical research

The NF Clinical Program is an active member in the Neurofibromatosis Clinical Trials Consortium. That means we are able to offer potential new treatments for children and adults with NF as part of these ongoing clinical studies. To find out more information about ongoing clinical trials, please visit the NF Center at https://nfcenter.wustl.edu/research/clinical-research/clinical-trials/.