Proclamation 5822

By the President of the United States of America A Proclamation

Tuberous sclerosis is an inherited disease whose neurological symptoms can run the gamut from speech disorders, mental retardation, and behavioral problems to motor difficulties and seizures. Small benign tumors may grow on the face and eyes, as well as in the brain, kidneys, and other organs. In its most devastating form, tuberous sclerosis leaves patients completely helpless and dependent.

Approximately one in every 10,000 Americans has tuberous sclerosis, placing this malady among the more common genetic disorders. Yet it often goes unrecognized. White spots that generally appear on the skin early in life are one characteristic sign, but symptoms often take considerable time to develop and are easily misdiagnosed.

There is currently no cure for tuberous sclerosis, but some of its symptoms are treatable. Seizures may be controlled by new anticonvulsant drugs. Children with learning, speech, and language disabilities may benefit from sophisticated educational techniques. People with motor handicaps can learn skills to increase their mobility and enhance daily living.

The best hope for alleviating the suffering brought on by this disease lies in biomedical research. The National Institute of Neurological and Communicative Disorders and Stroke (NINCDS), the focal point within the Federal government for research on neurogenetic disorders, encourages studies on tuberous sclerosis. Some investigators are striving to develop improved methods of treatment; others search for the location of the responsible gene so that the defect that leads to tuberous sclerosis can one day be identified, analyzed, and corrected.

Two private, voluntary health agencies, the American Tuberous Sclerosis Association and the National Tuberous Sclerosis Association, share with the NINCDS the task of informing Americans about this disorder and stimulating more scientific research. All Americans can take heart in the success of this cooperative effort, which is fundamental to the conquest of this disorder.

To further enhance public awareness of tuberous sclerosis, the Congress, by Senate Joint Resolution 212, has designated the week of May 8 through May 14, 1988, as "National Tuberous Sclerosis Awareness Week" and has authorized and requested the President to issue a proclamation in observance of the week.

Now, Therefore, I, Ronald Reagan, President of the United States of America, do hereby proclaim the week of May 8 through May 14, 1988, as National Tuberous Sclerosis Awareness Week, and I call upon the people of the United States to observe this week with appropriate ceremonies and activities.

In Witness Whereof, I have hereunto set my hand this twelfth day of May, in the year of our Lord nineteen hundred and eighty-eight, and of the Independence of the United States of America the two hundred and twelfth.

RONALD REAGAN

[Filed with the Office of the Federal Register, 10:18 a.m., May 13, 1988]