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    Presentation project Presentation project Presentation Transcript

    • Children’s Tumor Foundation
    • What is Neurofibromatosis (NF)?
    • 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
    • Public Service Announcement
    • You can make a difference.