[Congressional Record Volume 154, Number 92 (Thursday, June 5, 2008)]
[Extensions of Remarks]
[Pages E1159-E1160]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                MAY AS NEUROFIBROMATOSIS AWARENESS MONTH

                                 ______
                                 

                           HON. JOHN SULLIVAN

                              of oklahoma

                    in the house of representatives

                         Thursday, June 5, 2008

  Mr. SULLIVAN. Madam Speaker, I rise to state for the record, and 
bring to my colleague's attention, that the month of May is globally 
recognized as Neurofibromatosis Awareness Month.
  On May 13, 2008, Tami Harbour, her mother Marcia Higgins from Tulsa, 
Oklahoma, and Tami's 94 year-old grandmother Wilma Seely from Owasso, 
Oklahoma, came to my office with Tami's twin sister Teri to educate my 
staff and me about Neurofibromatosis (NF).
  NF is a genetic disorder that causes tumors to form on the nerves of 
the body. These tumors are not restricted to any certain portion of the 
body and can appear anywhere, at any time, at any age. NF type I 
strikes one in every 2,500--3,000 people, without regard to race, sex 
or age. The first signs of the condition are usually multiple cafe-au-
lait colored spots on the skin. Some of the youngest victims of this 
condition can also be subject to optic gliomas--brain tumors that can 
cause blindness and can be life-threatening. In addition, bone 
deformities, including scoliosis at an early age, and plexiform tumors, 
which can cause severe medical problems and turn cancerous, can also be 
caused by NF. Learning disabilities occur in more than 65 percent of 
the individuals with NF type 1.
  NF type 2 is a genetically distinct form of NF that causes tumors to 
form on both acoustic nerves, resulting in deafness. NF type 2 also 
causes visual problems and muscle weakness. Symptoms of this type of 
neurofibromatosis include ringing in the ears, balance problems, and 
reduced hearing; however, these symptoms often do not appear until the 
late teen years, even if the condition has been present since birth. NF 
type 2 strikes 1 in 30,000 people and does not discriminate by age, sex 
or race.
  At this time, surgery is the only effective treatment to relieve the 
problems caused by the symptoms of both forms of NF. There is no 
pharmaceutical treatment to control the growth of tumors and, 
unfortunately, there is no known cure. Half of the people with NF do

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not have a family history of the disorder; however, a person with NF 
has a 50 percent chance of passing on NF with each child he or she has.
  Although Tami is the only one in her family with NF type 1, she 
learned in her late teens that she had the disorder called Von 
Recklinghausen's Disease. However, her tumors did not start multiplying 
until she was a young adult. She has had a few thousand of tumors 
removed. She is in constant pain, but the condition does not stop her 
from performing her duties as a housekeeper at the nursing home where 
she has worked for the past eleven years.
  I am encouraged by the NF research being conducted at the National 
Cancer Institute, the National Institute of Neurological Disorders and 
Stroke, the National Human Genome Research Institute and medical 
centers throughout the United States, funded by the National Institutes 
of Health. With robust federal and privately funded NF research, it is 
my hope that one day soon we will have a cure for this disease.

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