[Congressional Record Volume 148, Number 126 (Tuesday, October 1, 2002)]
[House]
[Pages H6808-H6810]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
RECOGNIZING THE DEVASTATING IMPACT OF FRAGILE X
Mr. SHIMKUS. Mr. Speaker, I move to suspend the rules and agree to
the resolution (H. Res. 398) recognizing the devastating impact of
fragile X, urging increased funding for research on fragile X, and
commending the goals of National Fragile X Research Day, and for other
purposes.
The Clerk read as follows:
H. Res. 398
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 267 women is a carrier of the fragile X;
Whereas children born with fragile X typically require a
lifetime of special care at a cost of over $2,000,000 each;
Whereas fragile X frequently remains undetected because the
defect was relatively recently discovered and there is a lack
of awareness about the disease, even within the medical
community;
Whereas the gene 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-chromosome-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
interventions, and the significance that fragile X research
has for related disorders;
Whereas Members of Congress are in unique positions to help
raise public awareness about the need for increased funding
for research and early diagnosis and treatment for fragile X;
and
Whereas throughout the United States, families and friends
of individuals with fragile X have designated October 5 as
National Fragile X Research Day to promote efforts to find a
treatment and cure for fragile X: Now, therefore, be it
Resolved, That the House of Representatives--
(1) recognizes the devastating impact of fragile X on
thousands of people in the United States and their families;
(2) calls on the National Institutes of Health, the Centers
for Disease Control and Prevention, and other sources of
Federal and private research funds to enhance and increase
their efforts and commitments to fragile X research;
(3) calls on medical schools and other health educators,
medical societies and associations, and Federal, State, and
local health care facilities to promote research that will
lead to a treatment and cure for fragile X; and
(4) commends the goals and ideals of a National Fragile X
Research Day and supports interested groups in conducting
appropriate ceremonies, activities, and programs to
demonstrate support for such a day.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from
Illinois (Mr. Shimkus) and the gentleman from Texas (Mr. Green) each
will control 20 minutes.
The Chair recognizes the gentleman from Illinois (Mr. Shimkus).
General Leave
Mr. SHIMKUS. Mr. Speaker, I ask unanimous consent that all Members
may have 5 legislative days within which to revise and extend their
remarks on this legislation and to insert extraneous material on the
resolution.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from Illinois?
There was no objection.
Mr. SHIMKUS. Mr. Speaker, I yield myself such time as I may consume.
Mr. Speaker, I am pleased that today the House is considering House
Resolution 398 introduced by the gentleman from Oklahoma (Mr. Watkins)
to recognize the impact of fragile X on thousands of people in the
United States and their families. The Committee on Energy and Commerce
approved this resolution unanimously last week, and I encourage my
colleagues to adopt the resolution today on the floor.
Fragile X syndrome is the most common genetically inherited form of
mental retardation. Patients diagnosed with fragile X may experience
mental impairments that range from mild learning disabilities and
hyperactivity
[[Page H6809]]
to severe mental retardation and autism. While there is no specific
treatment for fragile X syndrome, health care professionals have
directed their efforts toward training and education so that children
with fragile X can reach their maximum potential.
The resolution before us today calls on both public and private
researchers to enhance their efforts to find a treatment and cure for
fragile X. The resolution also commends the work that advocates are
doing nationwide to raise awareness about fragile X.
I would also like to express my appreciation for the outstanding work
that the gentleman from Oklahoma has done to raise awareness about this
genetic disorder. The work that scientific researchers are conducting
throughout the United States we hope will ultimately lead to a cure.
Until then it is important that all of us show our support for families
affected by fragile X. I encourage my colleagues to support the
resolution.
Mr. Speaker, I reserve the balance of my time.
Mr. GREEN of Texas. Mr. Speaker, I yield myself such time as I may
consume. I rise to express my support for House Resolution 398, a
resolution recognizing the devastating impact of fragile X, urging
increased funding for fragile X research, and commending the goals of
National Fragile X Research Day.
Fragile X is the most common inherited cause of mental retardation,
affecting 1 in 2,000 boys and 1 in 4,000 girls. This condition causes a
host of mental and physical problems, including learning disabilities,
mental retardation, attention deficit and hyperactivity disorders,
anxiety, autistic-like behaviors, physical abnormalities and seizures.
Despite the prevalence of this illness, many Americans, including
health care providers, are unfamiliar with fragile X. As a result, 80
to 90 percent of individuals with fragile X are often misdiagnosed.
Without proper diagnosis many children are unable to reach their full
potential or get the education or treatment they need to better cope
with fragile X.
Fragile X is also a very expensive disease to treat. Most children
with fragile X require a lifetime of special care at a cost of over $2
million each. The lost wages, special education and health care costs
associated with fragile X create a significant societal burden that
justifies additional Federal research in this area. Advances in the
current research indicate that this would be a worthwhile investment.
Many prominent scientists have undertaken fragile X research
projects, rapidly accelerating the progress and leading to new
breakthroughs about its cause. Researchers have identified the set of
genes which are normally regulated by the fragile X gene.
{time} 1300
This set is also associated with other neurological and psychiatric
problems, and these advances could lead to breakthroughs in two other
neurological and psychiatric disorders, such as autism, pervasive
development disorder, Rett Syndrome, schizophrenia, obsessive-
compulsive disorder, Tourette's Syndrome, and numerous other disorders.
Research into the treatment of this genetic malfunction could benefit
the hundreds of thousands of people suffering from these diseases.
Mr. Speaker, I would like to thank my colleagues, the gentleman from
Oklahoma (Mr. Watkins) and the gentleman from Massachusetts (Mr.
Delahunt) for their commitment to finding a cure for fragile X, and I
urge my colleagues to join me in supporting this important cause.
Mr. Speaker, I reserve the balance of my time.
Mr. SHIMKUS. Mr. Speaker, I yield such time as he may consume to the
gentleman from Oklahoma (Mr. Watkins).
Mr. WATKINS of Oklahoma. Mr. Speaker, I rise today in support of
House Resolution 398, legislation that recognizes National Fragile X
Research Day this Saturday, October 5, 2002.
For several years, my good friend, the gentleman from Massachusetts
(Mr. Delahunt), and I have actively supported the goals of fragile X
families in order to help raise public awareness about the need for
increased funding for research and to provide early diagnosis and
effective treatment for fragile X. We have worked for funding for
research, and we have now introduced this noncontroversial and much-
needed resolution to show congressional support for improving the
treatment and finding a cure for this disease by observing the first
National Fragile X Research Day on this coming Saturday, October 5,
2002.
Mr. Speaker, fragile X is the most commonly inherited cause for
mental retardation, which affects, as the gentleman from Texas (Mr.
Green) just said, one in every 2,000 newborn boys and one in every
4,000 newborn girls in this country. One in every 261 women is a
carrier and has a 50 percent chance in each pregnancy of having a child
with fragile X. Most of these afflicted children will require a
lifetime of special care.
In recent years, however, there have been great strides made toward
finding a cure for this genetic disease. Current research holds great
promise for the development of effective treatments, but additional
support for these efforts are urgently needed by this Congress. Thanks
to the recent increase in Federal funding, many prominent scientists
have undertaken fragile X research projects for the first time, rapidly
accelerating progress and leading to new breakthroughs about its cause.
As one of the first discoveries of the Human Genome Project, the cause
of fragile X has been linked to the absence of a single protein. Since
then, our understanding of how this disease causes mental retardation,
seizures, aggressive outbursts, and severe anxiety has dramatically
increased. This research has lead Dr. James Watson, who shared the
Nobel Prize for discovering DNA, to believe that a cure for this
terrible disease is within sight, with our help, with our help from
Congress.
Mr. Speaker, my cousin was afflicted by this condition, a fact which
has profoundly affected our families. I have worked both to provide
funding for its research and to raise public awareness of this
particular problem. Additionally, I would like to mention McCall's
Chapel in Ada, Oklahoma, where my wife and I raised our family in that
community in my district. McCall's Chapel provides a facility for
families who lots of times have no facility willing to help them and
help the children who continue to suffer from mental retardation as
adults. McCall's Chapel is always there with open and welcoming arms.
Few States have places today that will accommodate and serve those
mentally retarded adults, but many families have been blessed by the
works of the good people at McCall's Chapel. Many of these families I
know personally.
Mr. Speaker, I would like to mention and thank my good friends who
are with us today, David and Mary Beth Busby, parents of two fragile X
boys of their own. I know both of these young men and they are a great
inspiration to me. This family is inspiring, and they are educating me
and also a lot of other people about the need for research and
treatment of fragile X.
Mr. Speaker, I urge all of my colleagues to adopt this resolution.
Mr. GREEN of Texas. Mr. Speaker, I yield 7 minutes to the gentleman
from Massachusetts (Mr. Delahunt).
Mr. DELAHUNT. Mr. Speaker, I thank the gentleman for yielding me this
time.
It was I think 4 years ago that a friend of mine in the Boston area
approached me and described to me the characteristics and the symptoms
of this disorder called fragile X. Like most Americans, I had never
heard of fragile X, but he told me there was a fellow from Oklahoma, a
Republican by the name of Wes Watkins, that was the champion of those
who were afflicted with this particular disorder, and he encouraged me
to seek him out. I am glad I did.
Fragile X, as others have said, is the most common inherited cause of
mental retardation. We have heard the statistics, the high incidence
rate, the fact that fragile X is relatively unknown, even among medical
professionals. It is easily identified by a simple blood test, yet
families are left often struggling for months, even years, searching
for explanations for alarming developmental delays and behavioral
problems associated with fragile X; and they live in a time of
uncertainty. There are some common physical signs such as large ears,
long faces,
[[Page H6810]]
and flat feet; but half of fragile X children do not exhibit any of
these characteristics. Other symptoms are less obvious, including
hyperactivity, attention deficits, severe anxiety, and even violent
seizures, making diagnosis difficult.
Again, I think it was the gentleman from Texas (Mr. Green) who
indicated that it is estimated that somewhere between 80 and 90 percent
of children with fragile X are currently undiagnosed or misdiagnosed.
So it is fitting that today we consider a resolution recognizing
National Fragile X Research Day and the urgency of the need to increase
funding for fragile X research.
Mr. Speaker, 2 years ago this week, Congress enacted another bill
sponsored by the gentleman from Oklahoma (Mr. Watkins) and myself; it
was labeled the Fragile X Research Breakthrough Act as part of the
Children's Health Act of 2000. This law directed an arm of the National
Institutes of Health to expand and coordinate research of fragile X and
authorize the establishment of at least three fragile X research
centers. I am pleased to report significant progress towards
implementing these provisions. Early this year, the institute began
accepting applications for the fragile X research centers, which
hopefully will be ready to open their doors this coming spring.
Thanks to this Federal commitment, many prominent scientists have
undertaken fragile X research projects, rapidly accelerating the
progress and leading to new breakthroughs about its cause. In a series
of landmark discoveries, researchers have identified the set of genes
which are normally regulated by the fragile X gene. Scientists are also
now pursuing promising drug therapies for fragile X as new evidence has
shown that this type of defect may be blocked by relatively simple
medications. These new discoveries may not only lead to treatments for
fragile X, but also have uncovered striking connections between fragile
X and a whole litany of other neurological and psychiatric disorders.
So all of this holds great promise for the development of safe and
effective treatments. But as the gentleman from Oklahoma (Mr. Watkins)
has indicated, there is a great more still to be done.
So I encourage all of my colleagues to support this resolution.
Again, I want to commend the gentleman from Oklahoma (Mr. Watkins). His
work in this particular endeavor is part of a wonderful legacy that he
can take with him as he leaves this institution after some 20 years. So
I want to extend my congratulations.
Mr. WATKINS of Oklahoma. Mr. Speaker, will the gentleman yield?
Mr. DELAHUNT. I yield to the gentleman from Oklahoma.
Mr. WATKINS of Oklahoma. Mr. Speaker, as the gentleman indicated, and
the gentleman is my friend, and believe me, I truly feel that. The
gentleman indicated that I am leaving. This is something I am very
proud of in a humanitarian way, and I am going to be, hopefully, asking
the gentleman to continue this work. I am going to be leaving the
House. But I know that the gentleman will continue that effort.
Mr. Speaker, I would like to dedicate this day to a classmate that I
had who had this when I was growing up. I used to sit next to him at
this country school with a popsicle, and I always shared half that
popsicle with him. So I dedicate this day to Herman Samples, that
classmate of mine.
Mr. DELAHUNT. Mr. Speaker, reclaiming my time, I promise my friend
and my colleague that I will take up this cause, and I will always
remember this particular story that the gentleman concluded his remarks
with. I too want to share in dedicating this day to him. Again, I thank
the gentleman for everything that he has done for so many.
Mr. BILIRAKIS. Mr. Speaker, I rise today in support of H. Res. 398,
which recognizes the devastating impact of Fragile X, the most common
inherited cause of mental retardation.
Fragile X mental impairment may range from mild learning disabilities
and hyperactivity to severe mental retardation. In addition to
intellectual disabilities, some individuals with Fragile X display
common physical traits and characteristic facial features. Children
with Fragile X often appear normal in infancy but develop typical
physical characteristics during their lifetimes. Because of scientific
advances, improvements in genetic testing, and increased awareness, the
number of children diagnosed with Fragile X has increased significantly
over the last decade.
I was proud to have worked with my friend from Ohio, Mr. Brown, to
expand research on a number of disorders that disproportionately affect
children, including Fragile X, through the Children's Health Act of
2000. The law urges the Director of the National Institutes of Health
(NIH) to expand, intensify, and coordinate research on Fragile X at
NIH.
Mr. Speaker, I urge my colleagues to support H. Res. 398, which
recognizes the devastating impact of Fragile X on thousands of people
in the United States and their families. Furthermore, this resolution
calls for additional Fragile X research and supports National Fragile X
Research Day.
Mr. BEREUTER. Mr. Speaker, as an original cosponsor of the
resolution, this Member wishes to add his strong support for H. Res.
398, which would recognize the impact of Fragile X and would call upon
the Federal Government to enhance and increase its efforts and
commitments to Fragile X research.
This Member would like to commend the distinguished gentleman from
Louisiana [Mr. Tauzin], the Chairman of the House committee on Energy
and Commerce, and the distinguished gentleman from Michigan [Mr.
Dingell], the ranking member of the House Committee on Energy and
Commerce, for bringing this important resolution to the House Floor
today. This Member would also like to commend the gentleman from
Oklahoma [Mr. Watkins] for sponsoring H. Res. 398 and for his personal
interest in Fragile X.
Fragile X syndrome is a hereditary condition which causes a wide
range of mental impairment, from mild learning disabilities to severe
mental retardation. It is the most common cause of genetically-
inherited mental impairment. In addition to mental impairment, Fragile
X is associated with a number of physical and behavioral
characteristics.
House Resolution 398 would recognize the devastating impact of
Fragile X on thousands of people in the United States and their
families. In addition, the resolution would call on the National
Institutes of Health, the Centers for Disease Control and Prevention,
and other sources of Federal and private research funds to enhance and
increase their efforts and commitment to Fragile X research.
Furthermore, the resolution also would call upon medical schools and
other health care educators, medical societies, and associations, and
Federal, state, and local health care facilities to promote research
that will lead to a treatment and cure for Fragile X. Finally, H. Res.
398 would comment the goals and ideas of a National Fragile X Research
Day and would support interested groups in conducting appropriate
ceremonies, activities, and programs to demonstrate support for such a
day.
Mr. Speaker, in closing, this Member urges his colleagues to support
H. Res. 398.
Mr. GREEN of Texas. Mr. Speaker, I yield back the balance of my time.
Mr. SHIMKUS. Mr. Speaker, I want to thank the gentleman from Oklahoma
and the gentleman from Massachusetts for their fine work on this bill,
and I yield back the balance of my time.
The SPEAKER pro tempore (Mr. Boozman). The question is on the motion
offered by the gentleman from Illinois (Mr. Shimkus) that the House
suspend the rules and agree to the resolution, H. Res. 398.
The question was taken.
The SPEAKER pro tempore. In the opinion of the Chair, two-thirds of
those present have voted in the affirmative.
Mr. GREEN of Texas. Mr. Speaker, I object to the vote on the ground
that a quorum is not present and make the point of order that a quorum
is not present.
The SPEAKER pro tempore. Pursuant to clause 8, rule XX and the
Chair's prior announcement, further proceedings on this motion will be
postponed.
The point of no quorum is considered withdrawn.
____________________