Proclamation 5848 --
Neurofibromatosis Awareness Month, 1989
By
the President of the
A
Proclamation
Neurofibromatosis
is a potentially debilitating genetic disorder that causes tumors to develop in
nervous system tissues. It affects one in 3,700 Americans. There are two known
types of neurofibromatosis. The great majority of patients have NF - 1,
characterized by six or more dark patches on the skin and by tumors on
peripheral nerves. The tumors can be severely disfiguring and painful and can
also result in bone deformations and visual impairment. In the less common NF -
2, tumors occur within the central nervous system, usually damaging nerves
crucial to hearing and balance.
Individuals
with neurofibromatosis, their families, and the health professionals who help
them can all benefit from new guidelines for the diagnosis and management of
this condition developed last year in a consensus conference at the National
Institutes of Health. At the conference, scientists studying the genetics of
neurofibromatosis presented particularly encouraging findings: They have
determined that the gene defect that causes NF - 1 lies on chromosome 17, and
the defect for NF - 2 on chromosome 22. These discoveries, medical experts
agree, should soon lead to the development of diagnostic tests capable of
definitively detecting neurofibromatosis gene carriers. As more is learned
about the genetic defects in neurofibromatosis, scientists will be better able
to design treatment strategies to assist those afflicted.
Private
voluntary health agencies, chiefly the National Neurofibromatosis Foundation,
are partners with the National Institute of Neurological and Communicative
Disorders and Stroke in the fight against this tragic disorder. Countless
families have been sustained and encouraged by support groups established by
these agencies in most large American cities. These agencies also play an
essential role in informing the health care professions and the general public
about neurofibromatosis, about the needs of patients and families, and about
the positive actions we can all undertake to ease their burdens.
To
enhance public awareness of neurofibromatosis, the Congress, by House Joint
Resolution 417, has designated May 1989 as ``Neurofibromatosis Awareness
Month'' and authorized and requested the President to issue a proclamation in
observance of that occasion.
Now,
Therefore, I, Ronald Reagan, President of the
In
Witness Whereof, I have hereunto set my hand this twenty-second day of August,
in the year of our Lord nineteen hundred and eighty-eight, 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 August 23.