Proclamation 5554

By the President of the United States of America A Proclamation

More than 20,000 Americans are afflicted with Gaucher's disease, the most common of a group of genetic disorders known as lipid storage disease. Because of a defective gene, people with this disease do not produce enough enzymes to break down fatty substances called lipids. The lipids accumulate in the body's cells. In victims of Gaucher's disease, the spleen and liver become enlarged, the abdomen distends, and bones erode. Some patients also develop mental retardation or dementia.

Gaucher's disease is hereditary. Children who inherit a defective gene from both parents develop the disease; children who inherit the gene from only one parent become carriers capable of passing the gene on to their own children. Gaucher's disease can afflict anyone, but it is particularly prevalent among people of Ashkenazi Jewish ancestry.

Until recently, there seemed little cause for optimism. But today, modern genetic engineering techniques are unraveling the mysteries of Gaucher's disease and other hereditary disorders. Scientists supported by the Federal government's National Institute of Neurological and Communicative Disorders and Stroke have identified the gene that is defective in Gaucher's disease and are now able to reproduce it in large enough quantities for study. It is also now possible for physicians to confirm a diagnosis of Gaucher's disease through simple blood and skin biopsy tests. Physicians can predict the severity of the disease in each patient, allowing those affected to make better informed health care plans for the future.

In addition, scientists have developed a method for replacing the enzyme that Gaucher's patients lack. Growing knowledge about genetic structure may someday enable scientists to transplant a normal gene into a patient's cells to replace the defective gene. But more remains to be learned before such procedures are perfected.

Voluntary agencies work side by side with government scientists in the effort to promote research on ways to treat and ultimately cure Gaucher's disease. In the work of these agencies, and that of the investigators they sponsor, lies the hope that we will one day conquer this genetic disorder.

To enhance public awareness of Gaucher's disease, the Congress, by Senate Joint Resolution 352, has designated the week beginning October 19, 1986, as "Gaucher's Disease Awareness Week" and authorized and requested the President to issue a proclamation in observance of that week.

Now, Therefore, I, Ronald Reagan, President of the United States of America, do hereby proclaim the week beginning October 19, 1986, as Gaucher's Disease Awareness Week, and I call upon the people of the United States to observe that week with appropriate ceremonies and activities.

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

RONALD REAGAN

[Filed with the Office of the Federal Register, 11:58 a.m., October 20, 1986]