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<PRE>[DOCID: f:hc25ih.txt]






107th CONGRESS
  1st Session
H. CON. RES. 25

   Expressing the sense of the Congress regarding tuberous sclerosis.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                            February 8, 2001

  Mrs. Kelly submitted the following concurrent resolution; which was 
            referred to the Committee on Energy and Commerce

_______________________________________________________________________

                         CONCURRENT RESOLUTION


 
   Expressing the sense of the Congress regarding tuberous sclerosis.

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 is the largest known genetic cause of epilepsy;
Whereas tuberous sclerosis is now the second largest identifiable genetic cause 
        of autism;
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 House of Representatives (the Senate 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.
                                 &lt;all&gt;

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