Neurofibromatosis NF is a Genetic or a Chromosome Disorder that Affects the Nervous System. This disorder causes tumors to grow anywhere in the body on nerve endings. There are three distinctive type of NF; NF-1, NF-2, and Schwannomatosis.
Diagnosis of NF-1 Six or more café-au-lait spots. Two or more neurofibromas of any type or one or more plexiform neurofibromas. Freckling in the axillaor groin area. Tumor on the optic pathway A distinctive bone lesion called dysplasia Occurs in 1:3,000 births
Diagnosis of NF-2 Is characterized by multiple tumors on the cranial and spinal nerves. NF-2 is much rarer that NF-1 occurring in 1:25,000 births NF-1 and NF-2 are similar in many ways but are two different disorders.
Schwannomatosis As only recently been recognized and occurs in 1:40,000 individuals. The inheritance patterns are not completely understood due to the lack of case studies.
Children’s Tumor Foundation Mission Statement Encourage and support research and the development of treatments and cures for NF types 1 and 2, Schwannomatosis and related disorders Support persons with NF, their families and caregivers by providing thorough, accurate, current and readily accessible information
Mission Statement Assist in the development of clinical centers, best practices and other patient support mechanisms (but not including direct medical care) to create better access to quality healthcare for affected individuals Expand public awareness of NF to promote earlier and accurate diagnoses by the medical community, increase the non-affected population's understanding of the challenges facing persons with NF, and encourage financial and other forms of support from public and private sources
Mara Leigh Fenlon
Mara has NF-1
Has more than six café-au-lait spots
Tumor on the optic nerve
Mara’s Tumors and Scars
Tumor on the inside of Mara’s left foot. This tumor can not be removed
Mara has had two tumors removed one from her knee and the other from her right foot.
How can you help???
How can we end NF together Make a Donation Family Funds Racing4Research (www.racing4research.org) Walk Program Find a local chapter or affiliate