[Congressional Record Volume 146, Number 26 (Thursday, March 9, 2000)]
[Senate]
[Pages S1424-S1425]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




     SENATE RESOLUTION 268--DESIGNATING JULY 17 THROUGH JULY 23 AS 
                 ``NATIONAL FRAGILE X AWARENESS WEEK''

  Mr. EDWARDS (for himself, Mr. Hagel, Mr. Robb, Mrs. Boxer, and Mr. 
Kerrey) submitted the following resolution; which was referred to the 
Committee on the Judiciary:

                              S. Res. 268

       Whereas Fragile X is the most common inherited cause of 
     mental retardation, affecting people of every race, income 
     level, and nationality;
       Whereas 1 in every 260 women is a carrier of the Fragile X 
     defect;
       Whereas 1 in every 4,000 children is born with the Fragile 
     X defect, and typically requires a lifetime of special care 
     at a cost of over $2,000,000;
       Whereas Fragile X remains frequently undetected due to its 
     recent discovery and the lack of awareness about the disease, 
     even within the medical community;
       Whereas the genetic defect causing Fragile X has been 
     discovered, and is easily identified by testing;
       Whereas inquiry into Fragile X is a powerful research model 
     for neuropsychiatric disorders, such as autism, 
     schizophrenia, pervasive developmental disorders, and other 
     forms of X-linked mental retardation;
       Whereas individuals with Fragile X can provide a 
     homogeneous research population for advancing the 
     understanding of neuropsychiatric disorders;
       Whereas with concerted research efforts, a cure for Fragile 
     X may be developed;
       Whereas Fragile X research, both basic and applied, has 
     been vastly underfunded despite the prevalence of the 
     disorder, the potential for the development of a cure, the 
     established benefits of available treatments and 
     intervention, and the significance that Fragile X research 
     has for related disorders; and
       Whereas the Senate 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 and early diagnosis and treatment for the disorder 
     known as Fragile X: Now, therefore, be it
       Resolved, That the Senate--
       (1) designates July 17 through July 23 as National Fragile 
     X Awareness Week; and
       (2) requests that the President issue a proclamation 
     calling upon the people of the United States to observe 
     National Fragile X Awareness Week with appropriate 
     recognition and activities.

  Mr. EDWARDS. Mr. President, I rise today with my colleague, Senator 
Hagel, submit the National Fragile X Awareness Week Resolution. This 
measure will establish July 17 through July 23 as National Fragile X 
Awareness Week.
  Fragile X is the leading known cause of mental retardation. Despite 
the devastating impact of the disease, the disorder is relatively 
unknown to many, even in the medical community, largely due to its 
fairly recent discovery.
  Today, one in 2,000 males and one in 4,000 females have the gene 
defect. One in every 260 women is a carrier. Current studies estimate 
that as many as 90,000 Americans suffer from Fragile X, yet up to 80 to 
90 percent of them are undiagnosed. It does not effect one racial or 
ethnic group more than another, and it is found in every socioeconomic 
group.
  Scientists have only known exactly what causes Fragile X since 1991. 
The disorder results from a defect in a single gene. Other diseases 
caused by single gene defects include cystic fibrosis and muscular 
dystrophy. In fact, the incidence of Fragile X is similar to that of 
cystic fibrosis.
  Fragile X occurs when a specific gene, which should hold a string of 
molecules that repeat six to fifty times, over-expands, causing the 
gene to hold anywhere from 200 to 1,000 copies of the same sequence, 
repeating over and over, much like a record skipping out of control. 
The result of this error is that instructions needed for the creation 
of a specific protein in the brain are lost. Consequently, the Fragile 
X protein is either low or absent in the affected person. The lower the 
level of the protein, the more severe the resulting disabilities.
  People with Fragile X have effects ranging from mild learning 
disabilities to severe mental retardation. Behavioral problems 
associated with Fragile X include aggression, anxiety, and seizures. 
The effects on both the victims of the disorder and their families are 
profound, taking a huge emotional and financial toll. People with 
Fragile X have a normal life expectancy but usually incur special costs 
that on average add up to over $2 million over their lifetime. Because 
it is inherited, many families have more than one child with Fragile X.
  Recent advances in Fragile X research now make it possible to test 
definitively for the disorder through DNA analysis. Yet many doctors 
are still not familiar with Fragile X, and subtle symptoms in early 
childhood can make it difficult to detect.

  Today, in our country, thousands of children have Fragile X, but 
their parents have never heard of the disease. These parents know 
something is wrong, but they cannot give the problem a name, and 
neither can any doctor they have consulted. They may know their child 
has mental retardation, but they do not know why. They do not know that 
if they have more children, those children may also be at risk. They do 
not know there are treatments for the problem. They do not know that 
someone is working on a cure.
  the same holds true for many adults in our society. They are living 
in group homes and in institutions around the country. They have been 
cared for during entire lifetimes by devoted family members. Yet they 
have never had a diagnosis beyond ``mental retardation.''
  The need to raise the profile of Fragile X across our nation is 
clear. The impact of the current lack of understanding of this disorder 
is that all too often it is years before the diagnosis is made. As a 
result, early intervention and treatment are delayed--treatment that 
could help to mitigate the effects of the disorder.
  We also hope that by raising awareness we can communicate the good 
news about Fragile X. Now that scientists have identified the missing 
protein that causes the disorder, there is hope for a cure. And because 
Fragile X is the only single-gene disease known to directly impact 
human intelligence, understanding the disease can give us insight into 
human intelligence and learning and into dealing with other single gene 
defects. Understanding Fragile X may also unlock some of the mysteries 
of autism, schizophrenia, and other neurological disorders. But we need 
to fund research efforts into this devastating disease.
  Mr. President, this resolution seeks to raise awareness in both the 
general population and the medical community about the presence and 
effects of Fragile X. By doing so, we hope to promote earlier diagnosis 
of the disease, more effective treatment, and support for research that 
will one day lead to a cure.

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