About NF

Neurofibromatosis (NF) is a genetic disorder that causes tumors to grow on nerves throughout the body, including the brain and spinal cord. NF can lead to blindness, deafness, chronic pain, bone abnormalities, cancer, and a wide range of additional complications. NF affects more than one in every 3,000 children born, more than Cystic Fibrosis, Duchenne Muscular Dystrophy, and Huntington’s disease combined. NF affects people of all races and ethnic origins and half of all cases arise in families with no history of the disorder.

Types Of Neurofibromatosis

Neurofibromatosis (NF) has been classified into three distinct types: NF1, NF2 and Schwannomatosis.

Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, it is characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF1 also have learning disabilities.

Neurofibromatosis 2 (NF2): also known as Bilateral Acoustic NF (BAN), is much rarer and occurs in 1:25,000 births.NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom.

What is the Children's Tumor Foundation?

The Children’s Tumor Foundation is the leading nonprofit funding source of NF research in the world. Through the implementation of the Foundation’s research initiatives, progress is being made on all fronts and for all types of NF; from discovery studies — understanding the molecular signaling deficits that cause the manifestations of NF — to the growth of preclinical drug screening initiatives and the emergence of a growing number of clinical trials. The Foundation advances research through strategically integrated programs that speed therapies from the lab to the patient.