Educational Brochures (pdfs)
Our educational brochures have been designed to provide families with NF1 valuable information on all stages of NF1 from birth through adulthood. These brochures will help you know what to expect and provide advice for how to handle specific issues that may arise.
NF1 is the most common disorder you’ve probably never heard of. Take a moment to learn the basics about what NF1 is and how your child may develop in the coming years. Although we have no way of knowing exactly what issues an individual might face, understanding the basics about NF1 will give you a good foundation for helping your child to manage his or her NF as he or she continues to grow.
Many children with NF1 experience difficulties with learning disabilities. We find that the best way to address these issues is early intervention. Use this brochure to learn what academic issues your child might face in the future in order to help him or her achieve his or her greatest potential.
Many children with NF1 experience difficulties with executive functioning. This means your child may have trouble with attention skills or with planning. We find that the best way to address these issues is early intervention. Use this brochure to learn what issues your child might face in the future in order to help him or her achieve his or her greatest potential.
Children with NF1 may also have problems with attention, learning, and developing peer relationships (friendships). These social interaction problems are often caused by Autism Spectrum Disorder (ASD), and frequently go unrecognized during childhood. Use this handout to learn more about ASD and its relation to NF1, and how it is important to identify ASD early and to promptly obtain appropriate resources.
When your child’s NF1 challenges relate to motor skills, language development or self-help skills, pediatric therapists offer solutions. Physical, occupational and speech therapists are licensed health care providers, who are available to expertly support your child’s development.
Club NF is a series of FREE events, that empower families and children affected by NF1 through the use of play-based therapy and education. Each event focuses on motor, social and behavioral skills in a safe and fun environment where children in grades K – 8 receive FREE therapeutic services from our St. Louis Children’s Hospital therapists and Team NF support staff. Learn more about Club NF and view upcoming events.
Being a young adult is difficult under any circumstances, but sometimes dealing with something as serious as NF1 can make it even more challenging. This brochure is designed to remind you that you are more than your diagnosis of NF1, and while there are things you can’t control about NF1, that doesn’t mean you can’t still achieve your personal goals.
Sometimes there are people you want to tell about your NF1, maybe a best friend or a significant other. It can be scary and challenging to start the conversation if you aren’t prepared. Use this brochure to learn some techniques for talking to others about NF1.
Totally TEEN (Thrive. Engage. Educate. Neurofibromatosis.) is FREE social and life skills program for teenagers with NF1. The goal of Totally TEEN is to improve conversational and executive function skills to begin preparing teenagers for the transition to adulthood. Events are held bi-monthly on Saturdays at various locations across the Greater St. Louis area, such as Topgolf and Schnucks Cooking School. Led by an occupational therapist and a neuropsychologist at St. Louis Children’s Hospital, sessions focus on: Handling bullying, choosing appropriate friends, exploring career interests, money management, and food preparation.
Participation in individual sports may enable your child with NF1 to experience greater success, especially if coordination and/or attention are a problem. Individual sports can better accommodate the specific needs of your child, encouraging success at the pace of each athlete. Discover recommended sports for your child with NF1.
NF1 looks different at different times of life. As a child you might only have some spots. As you continue to grow, however, you may start to develop new features such as bumps called neurofibromas. Use this brochure to learn what to expect from NF1 as you develop from a child into a teenager and eventually an adult.
NF1 looks different at different times of life. Tumors, bone problems, high blood pressure, higher incidence of strokes and chronic pain can all affect quality of life in adults with NF1. Use this brochure to discover what you should expect as an adult living with NF1, and learn about possible treatment plans to address specific concerns.
Sometimes there are people you want to tell about your or your child’s NF1, maybe a family member or a significant other. It can be scary and challenging to start the conversation if you aren’t prepared. Use this brochure to learn some techniques for talking to others about NF1.