•HCON 25 RH
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 be-
lieved 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 consulta-
tion of at least three specialists;
Whereas tuberous sclerosis is the largest known genetic cause
of epilepsy;
Whereas tuberous sclerosis is now the second largest identifi-
able genetic cause of autism;
Whereas tuberous sclerosis frequently goes undiagnosed be-
cause 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 fund-
ing for research, detection, and treatment of tuberous
sclerosis and to support the fight against tuberous scle-
rosis: Now, therefore, be it
•HCON 25 RH
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 be-
lieved 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 consulta-
tion of at least three specialists;
Whereas tuberous sclerosis frequently goes undiagnosed because
of the obscurity of the disease and the mild form the symp-
toms may take; and
Whereas the Congress as an institution, and Members of Con-
gress 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, there-
fore, be it
Resolved by the House of Representatives (the Senate
concurring), That it is the sense of the Congress that—
•HCON 25 RH
(1) all Americans should take an active role in
the fight against tuberous sclerosis by all means
available to them, including early and complete clin-
ical 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, test-
ing, 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, tu-
berous sclerosis may be discovered; and
(C) continue to consider ways to improve
access to, and the quality of, health care serv-
ices for detecting and treating tuberous scle-
rosis; 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
•HCON 25 RH
provide to the Congress a five-year research plan for
tuberous sclerosis.
House Calendar No. 67
107TH CONGRESS
1ST SESSION
H. CON. RES. 25
[Report No. 107–181]
CONCURRENT RESOLUTION
Expressing the sense of the Congress regarding
tuberous sclerosis.
AUGUST 1, 2001
Reported with an amendment, referred to the House
Calendar, and ordered to be printed