Proclamation 5796 -- Gaucher's Disease Awareness Week, 1988

 

April 13, 1988

 

By the President of the United States of America

 

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 United States of America, do hereby proclaim the week beginning October 16, 1988, 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 thirteenth day of April, 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, 12:09 p.m., April 14, 1988]