Proclamation 5554 -- Gaucher's Disease Awareness Week, 1986
By
the President of the
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
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
Ronald
Reagan
[Filed
with the Office of the Federal Register,
Note:
The proclamation was released by the Office of the Press Secretary on October
20.