Proclamation 5796 -- Gaucher's Disease Awareness Week, 1988
By
the President of the
A
Proclamation
Gaucher's disease, the most common of a group of
inherited disorders known as lipid storage diseases, afflicts more than 20,000
Americans. It most commonly strikes people of Eastern European Jewish descent,
affecting approximately one in every 2,500 people in this group.
Investigators
at the Federal government's National Institute of Neurological and
Communicative Disorders and Stroke (NINCDS) discovered that Gaucher's
disease is caused by the failure of the body to produce an enzyme needed to
break down fatty substances called lipids that arise from the normal renewal of
the body's cells and tissues. In Gaucher's disease, a
specific lipid builds up in body tissues, causing enlargement of the spleen and
liver, bone pain, and fractures. In severe cases, serious neurological
disorders may occur.
NINCDS
scientists and other investigators supported by both public and private funds
have narrowed the search for effective management and treatment of this
disease. It is now possible to identify carriers of Gaucher's
disease. The gene responsible for producing the needed enzyme has been cloned
and its structure in normal individuals and Gaucher's
disease patients is being studied. Scientists are continuing to refine
techniques for replacing the missing enzyme as a useful form of therapy. They
are also examining methods that may eventually allow them to replace the
defective gene and provide a permanent cure.
Gaucher's patients are further encouraged and
sustained by the work of dedicated voluntary health agencies such as the
National Gaucher Foundation. These groups provide
information and services to patients and their families and work closely with
the NINCDS to promote research. When Gaucher's
disease is finally conquered, it will be thanks to the cooperative efforts of
both private and Federal agencies.
To
enhance public awareness of Gaucher's disease, the
Congress, by Public Law 100 - 254, has designated the week beginning October
16, 1988, 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 thirteenth day of April, in
the year of our Lord nineteen hundred and eighty-eight, and of the
Ronald
Reagan
[Filed with the Office
of the Federal Register,