Proclamation 6495—National Neurofibromatosis Awareness Month, 1992

This week we pause to reaffirm our Nation's commitment to the fight against neurofibromatosis, a common genetic disorder that affects the nervous systems of more than 100,000 Americans.

Neurofibromatosis appears in two forms. In the more prevalent form, NF1, masses of tissue grow along nerve pathways beneath the skin or deeper in the body. While most individuals with NF1 experience mild symptoms and few adverse effects on their ability to lead normal lives, some persons with the disorder can be severely disfigured by facial or bodily tumors that may also press against vital organs, causing serious complications such as blindness or loss of limbs. In the disorder's other form, NF2, tumors grow along the nerves responsible for hearing and balance. These tumors, although they are nonmalignant, often result in hearing loss. Both forms of neurofibromatosis are complex and unpredictable, and there is no way to foretell the eventual severity of individual cases.

While many questions about neurofibromatosis remain unanswered, scientists do know that the disorder is caused by a defective gene that changes the way in which normal cells develop and function. Children of a parent who has the defective gene have a 50 percent chance of being born with neurofibromatosis. Spontaneous genetic mutations can also cause NF to appear in a person who has no family history of the disorder. Neurofibromatosis can strike any American, regardless of gender, race, or ethnic background.

Although no cure or means of preventing neurofibromatosis currently exists, recent advances in biomedical research offer encouragement to many people with the disorder. The refinement of diagnostic technologies such as magnetic resonance imaging have enabled physicians to isolate tiny tumors that might otherwise go undetected, thereby helping doctors to identify and track progression of the disease. In July 1990, scientists located the gene associated with NF1 and have been working since to decipher its faulty message -- a task that is crucial to finding a cure. Similarly, scientists are drawing closer to locating the gene associated with NF2 and, with each step, hope to design better detection and treatment strategies. Investigators are also exploring the possibility that the genes responsible for neurofibromatosis may play an important role in several common forms of cancer, and scientists hope to study the anatomical and biological characteristics of the disease in a newly identified animal model.

The biomedical research community has taken significant strides toward solving the mystery of neurofibromatosis, and the 1990s, which I have proclaimed as the "Decade of the Brain," hold the promise of even greater advances in the near future. Achieving them is a goal shared by private voluntary health organizations such as the National Neurofibromatosis Foundation and Neurofibromatosis, Incorporated, and by the Federal Government's National Institute of Neurological Disorders and Stroke, as well as other components of the National Institutes of Health, including the National Cancer Institute and the National Institute on Deafness and Other Communication Disorders.

In order to enhance public awareness of neurofibromatosis, the Congress, by House Joint Resolution 422, has designated the month of November 1992 as "National Neurofibromatosis Awareness Month" and has requested the President to issue a proclamation in observance of this month.

Now, Therefore, I, George Bush, President of the United States of America, do hereby proclaim November 1992 as National Neurofibromatosis Awareness Month. I invite all Americans to observe this month with appropriate programs and activities.

In Witness Whereof, I have hereunto set my hand this eighteenth day of October, in the year of our Lord nineteen hundred and ninety-two, and of the Independence of the United States of America the two hundred and seventeenth.

GEORGE BUSH