[Congressional Record Volume 147, Number 124 (Friday, September 21, 2001)]
[Senate]
[Page S9632]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]


   SENATE CONCURRENT RESOLUTION 69--EXPRESSING SUPPORT FOR TUBEROUS 
                          SCLEROSIS AWARENESS

  Mr. WARNER (for himself and Mr. Hagel) submitted the following 
concurrent resolution; which was referred to the Committee on Health, 
Education, Labor, and Pensions:

                            S. Con. Res. 69

       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 obsecurity 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 the 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.

  Mr. WARNER. Madam President, I rise today to introduce a resolution 
to help increase the awareness of tuberous sclerosis or TS. Even though 
1,000,000 people worldwide are affected with this disease, few are even 
aware of it.
  TS is a genetic condition characterized by lesions of the skin and 
central nervous system, tumor growth and seizures, and TS is 
transmitted either through genetic inheritance or as a spontaneous 
genetic mutation. It is the leading known cause of epilepsy, and may 
also cause brain, eye or kidney tumors, hydrocephalus, and disfiguring 
growths on the skin. At least two children born every day will be 
affected by TS, which affects 1 million people worldwide of all races 
and ethnic groups. Infants and children too often spend their lives 
being misdiagnosed, possibly leading to irreparable brain damage, 
Kidney failure, and even premature death.
  Because there is no cure for this disease, early intervention is 
important in helping to overcome developmental delays. Passage of this 
important resolution will help to raise the importance of early 
detection and proper treatment of TS; encourage increased funding for 
research and treatments; and call upon the National Institutes of 
Health, NIH, to develop a research plan for TS.
  For all of the families that are affected by this terrible disease, I 
ask that my colleagues support this important legislation. By helping 
America to learn about and understand tuberous sclerosis, we will help 
to improve the quality of life for many Americans.

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