[Congressional Bills 107th Congress]
[From the U.S. Government Publishing Office]
[S. Con. Res. 69 Introduced in Senate (IS)]
107th CONGRESS
1st Session
S. CON. RES. 69
Expressing support for tuberous sclerosis awareness.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
September 21, 2001
Mr. Warner (for himself and Mr. Hagel) submitted the following
concurrent resolution; which was referred to the Committee on Health,
Education, Labor, and Pensions
_______________________________________________________________________
CONCURRENT RESOLUTION
Expressing support for tuberous sclerosis awareness.
Whereas at least two children born each day will be affected with tuberous
sclerosis;
Whereas nearly one million people worldwide are known to have tuberous
sclerosis;
Whereas tuberous sclerosis affects all races and ethnic groups equally;
Whereas tuberous sclerosis is caused by either an inherited autosomal disorder
or by a spontaneous genetic mutation;
Whereas when tuberous sclerosis is genetically transmitted as an autosomal
dominant disorder, a child with a parent with the gene will have a 50-
percent chance of inheriting the disease;
Whereas two-thirds of the cases of tuberous sclerosis are believed to be a
result of spontaneous mutation, although the cause of such mutations is
a mystery;
Whereas diagnosis takes an average of 90 days with consultation of at least
three specialists;
Whereas tuberous sclerosis frequently goes undiagnosed because of the obscurity
of the disease and the mild form the symptoms may take; and
Whereas the Congress as an institution, and Members of Congress as individuals,
are in unique positions to help raise public awareness about the need
for increased funding for research, detection, and treatment of tuberous
sclerosis and to support the fight against tuberous sclerosis: Now,
therefore, be it
Resolved by the Senate (the House of Representatives concurring),
That it is the sense of Congress that--
(1) all Americans should take an active role in the fight
against tuberous sclerosis by all means available to them,
including early and complete clinical testing and investigating
family histories;
(2) the role played by national and community organizations
and health care providers in promoting awareness of the
importance of early diagnosis, testing, and ongoing screening
should be recognized and applauded;
(3) the Federal Government has a responsibility to--
(A) endeavor to raise awareness about the
importance of the early detection of, and proper
treatment for, tuberous sclerosis;
(B) increase funding for research so that the
causes of, and improved treatment for, tuberous
sclerosis may be discovered; and
(C) continue to consider ways to improve access to,
and the quality of, health care services for detecting
and treating tuberous sclerosis; and
(4) the Director of the National Institutes of Health
should take a leadership role in the fight against tuberous
sclerosis by acting with appropriate offices within the
National Institutes of Health to provide to the Congress a
five-year research plan for tuberous sclerosis.
<all>