[Congressional Record (Bound Edition), Volume 146 (2000), Part 6]
[Senate]
[Pages 7448-7449]
[From the U.S. Government Publishing Office, www.gpo.gov]



                       FIGHTING NEUROFIBROMATOSIS

  Mr. KENNEDY. Mr. President, I welcome the opportunity to call the 
attention of the Senate to neurofibromatosis, or NF, a cruel 
neurological disorder that affects so many of our citizens. In the 
past, groups who come together to fight NF have asked Congress to 
designate May as ``World Neurofibromatosis Awareness Month.'' This 
year, they are directing their energies to more substantive issues. I 
commend NF Inc. and other advocates across the nation for their 
leadership and their strong commitment to this cause.
  NF is a genetic disorder of the nervous system that can cause tumors 
on nerves anywhere in the body at any time. It is a progressive 
disorder that affects all ethnic groups and both sexes equally. It is 
one of the most common genetic disorders in the United States--
affecting one in every 4,000 births.
  There are two genetically distinct forms of this disorder--NF-1 and 
NF-2. The effects are unpredictable and have varying manifestations and 
degrees of severity.
  NF-1 is the more common type, occurring in about 1 in 4,000 people in 
the United States. Symptoms include five or more light brown skin spots 
known as cafe-au-lait macules, as well as tumors that can grow on the 
eyes or spine. In most cases, the symptoms are mild and people can live 
normal and productive lives. In some cases, however, NF-1 can be 
severely debilitating.
  NF-2 is less common, affecting about 1 in 40,000 people, and much 
more severe. Tumors grow near the auditory

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nerve and often cause pressure on other nerves in the head and the 
body. Tumors also grow on the spine, and attack the central nervous 
system. People with NF-2 often experience deafness, frequent headaches 
and facial pain, facial paralysis, cataracts, and difficulty with 
balance.
  There is no known cure for either form of the disorder, even though 
the genes for both NF-1 and NF-2 have been identified. Currently, NF 
has no treatment, other than the surgical removal of tumors, which 
sometimes grow back.
  The disorder is not infectious. Only half of those affected with it 
have a prior family history of NF. If someone does not have NF, they 
cannot pass it on to their children.
  Talented researchers across the country are making impressive strides 
in finding a cure for this serious disorder. Thanks in great part to 
the research sponsored by the National Institute of Neurological 
Disorders and Stroke at NIH, scientists have already identified the two 
genes that cause NF, and significant progress in developing new 
treatments is being made.
  Much of the cutting-edge research on NF is being performed at the NF 
Clinic at Massachusetts General Hospital in Boston, which was founded 
in 1982 by Dr. Robert Martuza. It was one of the first clinics to 
recognize the unique multi-disciplinary problems that NF patients and 
their families face--and the vital role that a dedicated clinic plays 
in the research community. The McLain Hospital in Belmont, 
Massachusetts also has a vital role in supporting important research, 
particularly for NF-2.
  One of the most difficult aspects of having NF, or caring for a 
patient with NF, is not knowing what the future will bring. Our lack of 
knowledge about the cause of the tumors associated with the disorder 
also makes the evaluation of potential therapies difficult. In 
association with Children's Hospital of Boston and the House Ear 
Institute in Los Angles, the NF Clinic at MGH is participating in an 
international study to define the types of tumors most commonly 
associated with NF.
  Congress has a responsibility to provide these dedicated medical 
professionals and researchers with the resources and support necessary 
to continue their lifesaving work. President Clinton has asked for 
increased funding to fight this disorder and many other neurological 
illnesses.
  We must also ensure that a person's genetic information cannot be 
used as a basis for discrimination. To receive appropriate care for NF, 
patients must have access to genetic tests, free from the concern that 
the results of those tests will be used to discriminate against them in 
any way.
  I commend the dedicated researchers and physicians across the country 
for their commitment to this important issue, and I commend advocates 
like NF Inc. for their leadership. I look forward to rapid progress in 
the years ahead, and I am confident that Congress and the 
Administration will do as much as possible to support their all-
important efforts. Together, we can cure NF.

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