Children’s Tumor Foundation
What is Neurofibromatosis (NF)?
NeurofibromatosisNF 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-1Six 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 pathwayA distinctive bone lesion called dysplasia Occurs in 1:3,000 births
Diagnosis of NF-2Is characterized by multiple tumors on the cranial and spinal nerves.NF-2 is much rarer that NF-1 occurring in 1:25,000 birthsNF-1 and NF-2 are similar in many ways but are two different disorders.
SchwannomatosisAs 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 FoundationMission StatementEncourage and support research and the development of treatments and cures for NF types 1 and 2, Schwannomatosis and related disordersSupport persons with NF, their families and caregivers by providing thorough, accurate, current and readily accessible information
Mission StatementAssist 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 individualsExpand 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 FenlonMara has NF-1
Has more than six café-au-lait spots
Tumor on the optic nerveMara’s Tumors and ScarsTumor 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 DonationFamily FundsRacing4Research (www.racing4research.org)Walk ProgramFind a local chapter or affiliate
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Presentation project

  • 3. NeurofibromatosisNF 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.
  • 4. Diagnosis of NF-1Six 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 pathwayA distinctive bone lesion called dysplasia Occurs in 1:3,000 births
  • 5. Diagnosis of NF-2Is characterized by multiple tumors on the cranial and spinal nerves.NF-2 is much rarer that NF-1 occurring in 1:25,000 birthsNF-1 and NF-2 are similar in many ways but are two different disorders.
  • 6. SchwannomatosisAs 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.
  • 7. Children’s Tumor FoundationMission StatementEncourage and support research and the development of treatments and cures for NF types 1 and 2, Schwannomatosis and related disordersSupport persons with NF, their families and caregivers by providing thorough, accurate, current and readily accessible information
  • 8. Mission StatementAssist 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 individualsExpand 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
  • 10. Has more than six café-au-lait spots
  • 11. Tumor on the optic nerveMara’s Tumors and ScarsTumor on the inside of Mara’s left foot. This tumor can not be removed
  • 12. Mara has had two tumors removed one from her knee and the other from her right foot. How can you help???
  • 13. How can we end NF together Make a DonationFamily FundsRacing4Research (www.racing4research.org)Walk ProgramFind a local chapter or affiliate
  • 15. You can make a difference.