[Congressional Record Volume 156, Number 108 (Wednesday, July 21, 2010)]
[House]
[Pages H5880-H5882]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
SUPPORTING FRAGILE X AWARENESS DAY
Mr. PALLONE. Madam Speaker, I move to suspend the rules and agree to
the resolution (H. Res. 611) supporting the goals and ideals of
``Fragile X Awareness Day,'' as amended.
The Clerk read the title of the resolution.
The text of the resolution is as follows:
H. Res. 611
Whereas fragile X syndrome is the most common form of
inherited intellectual and developmental disabilities (IDDs);
Whereas an expansion of the CGG trinucleotide repeat in the
FMR1 gene--a human gene that codes for a protein called
fragile X mental retardation protein--causes almost all cases
of fragile X syndrome;
Whereas fragile X mental retardation protein is normally
made in many tissues, especially in the brain and the testes;
Whereas fragile X mental retardation protein may play a
role in the development of synaptic connections between nerve
cells in the brain where cell-to-cell communication occurs;
Whereas there is a relationship between fragile X syndrome
and autism;
Whereas up to one-third of all children diagnosed with
fragile X syndrome also have autism or an autism spectrum
disorder;
Whereas over 100,000 people in the United States have
fragile X syndrome and an estimated 1,000,000 people in the
United States carry a fragile X mutation and have or are at
risk of developing a fragile X-associated disorder;
Whereas fragile X-associated disorders include fragile X
syndrome, which causes language, behavioral, and
developmental disabilities; fragile X-associated tremor/
ataxia syndrome--an adult onset progressive neurological
condition causing tremors and balance and memory problems
primarily in male carriers that can lead to decreased life
expectancy; and fragile X-associated primary ovarian
insufficiency--a cause of infertility, early menopause, and
other ovarian problems in female carriers;
Whereas doctors can accurately identify and diagnose
fragile X syndrome, fragile X-associated tremor/ataxia
syndrome, and fragile X-associated primary ovarian
insufficiency;
Whereas the National Institutes of Health is currently
funding several studies that may lay the groundwork for
screening of all newborns in the United States for early
detection of the fragile X mutation;
Whereas increased research into fragile X syndrome may lead
to a better understanding of the disorder, more effective
treatments, and an eventual cure; and
Whereas advocacy organizations have designated July 22 as
``Fragile X Awareness Day'': Now, therefore, be it
Resolved, That the House of Representatives--
(1) supports the goals and ideals of ``Fragile X Awareness
Day'';
(2) supports raising awareness and educating the public
about fragile X syndrome and associated disorders;
(3) applauds the efforts of advocates and organizations
that encourage awareness, promote research, and provide
education, support, and hope to those impacted by fragile X
syndrome;
(4) recognizes the commitment of parents, families,
researchers, health professionals, and others dedicated to
finding an effective treatment and cure for fragile X
syndrome;
(5) urges all physicians, health care providers, and
specialists to--
(A) learn the clinical signs and symptoms of fragile X
syndrome, fragile X-associated disorders, fragile X-
associated primary ovarian insufficiency, and fragile X-
associated tremor/ataxia syndrome;
(B) use diagnostic, developmental screening, and
surveillance modalities to detect fragile X-associated
disorders;
(C) test, when appropriate, individuals exhibiting signs of
developmental delay or an autism spectrum disorder to
determine the status of their FMR1 gene;
(D) gain a full understanding of the genetic implications
of all fragile X-associated disorders, and when appropriate,
make a referral to a geneticist or genetic counselor to
assure that affected individuals and their families are aware
of how a fragile X-associated disorder may impact their
extended family; and
(E) provide patients diagnosed with fragile X-associated
disorders with supplemental information maintained by the
Centers for Disease Control and Prevention, the National
Institute of Child Health and Human Development, and private
foundations such as the National Fragile X Foundation and the
FRAXA Research Foundation;
(6) recommends that the National Institutes of Health and
related member institutes implement the research plan on
fragile X syndrome and associated disorders developed by the
Trans-NIH Fragile X Research Coordinating Group and
Scientific Working Groups; and
(7) supports funding for research into the causes,
treatment, and cure for fragile X syndrome.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from New
Jersey (Mr. Pallone) and the gentleman from Mississippi (Mr. Harper)
each will control 20 minutes.
The Chair recognizes the gentleman from New Jersey.
General Leave
Mr. PALLONE. Madam Speaker, I ask unanimous consent that all Members
may have 5 legislative days in
[[Page H5881]]
which to revise and extend their remarks and include extraneous
material in the Record.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from New Jersey?
There was no objection.
Mr. PALLONE. Madam Speaker, at this time I would like to yield,
initially, such time as he may consume to the gentleman from
Massachusetts (Mr. Delahunt).
Mr. DELAHUNT. I thank the gentleman for yielding me this time.
Madam Speaker, it was some 13 years ago that a friend of mine at home
approached me and described to me the characteristics and symptoms of a
disorder he called fragile x. He demonstrated a familiarity with
fragile x that was extraordinary, but he was talking about his son. I
was embarrassed because I had no idea what he was talking about, but I
was certainly not alone.
I, like many Americans, had never heard of fragile x, but his passion
and our friendship motivated me to work with my colleagues to address
this issue which is of such concern to so many in this country. And it
is this lack of awareness that is at the heart of the problem. Most
people who exhibit the characteristics of fragile x are not tested due
to a simple lack of understanding, and this applies to both the medical
community and to the general population. For that reason, I joined with
two champions, Mr. Harper of Mississippi and Mr. Hare, my friend and
colleague on this side of the aisle, to reestablish the Fragile X
Caucus. The goal has simply been to raise public awareness of this
rather obscure disease, this disorder.
So today we speak on the resolution to commemorate--or re-
commemorate--Fragile X Awareness Day, which is tomorrow, July 22, and
to continue in an effort to raise awareness.
Fragile x is the most common known genetic cause of autism. It
affects one in 4,000 males and one in 6,000 females of all races and
ethnic groups. Over 100,000 Americans have fragile x syndrome; another
1 million Americans have or are at risk for developing an associated
disorder. But through public awareness, we have the power to reduce the
frequency of fragile x. Through early testing, research and education,
we can make a difference. In fact, a simple blood test can now detect
fragile x. And now, as a result of the Fragile X Breakthrough Act,
which I co-sponsored along with my then-colleague, Wes Watkins of
Oklahoma, many scientists have conducted critical fragile x research
projects rapidly accelerating new breakthroughs to help us understand
its causes. Still, there remains much to be done.
In 2002, as my colleagues and I were debating a resolution to
recognize National Fragile X Research Day, I promised Wes Watkins that
I would continue to support this cause which he had championed during
his career in this body. So now as I retire at the end of this term and
move on with the next phase of my life, I rise today and ask my
colleagues to continue to support this work.
{time} 1310
It is my hope that, one day, we will see a time when all families
suffering from the effects of fragile X will be helped so that they,
too, will have the chance to move on and to enjoy the next phases of
their lives.
On behalf of the thousands of Americans who have fragile X and the
millions who are at risk--and their families--I urge my colleagues to
support this resolution.
I thank the gentleman for yielding the time, and I, again, want to
acknowledge Mr. Harper and Mr. Hare for their outstanding work.
Mr. PALLONE. Madam Speaker, I reserve the balance of my time.
Mr. HARPER. I yield myself such time as I may consume.
Madam Speaker, I rise today in support of H. Res. 611, a resolution
supporting the goals and ideals of Fragile X Awareness Day.
Today, we recognize those with fragile X syndrome, their families,
and the health care providers dedicated to treating and finding a cure
for fragile X. Fragile X-associated disorders include three separate
and distinct conditions: fragile X syndrome, fragile X-associated
tremor-ataxia syndrome, and fragile X-associated primary ovarian
insufficiency.
According to current studies, approximately one in 3,600 males and
one in 4,000 to 6,000 females are born with the full mutation, and as
many as one in 130 women are estimated to be carriers of the fragile X
mutation.
These disorders are genetic, resulting in behavioral, developmental,
and language disabilities throughout a person's lifetime. Fragile X is
linked to a mutation of a single gene on the X chromosome and is the
most commonly inherited form of intellectual disabilities. This
condition is also linked to reproductive problems in women, including
early menopause and a Parkinson's-like condition in older male
carriers.
As the only Member of Congress who has a child with fragile X
syndrome, my family understands the daily challenges that individuals
with intellectual disabilities are confronted with. Like many parents,
it took my wife and me a long time to understand and accept our son,
Livingston's, diagnosis. Though, once we did, we began to also see our
son for who he is--for all of the exceptional qualities he holds as an
individual, for the positive impact he has on people he comes across in
everyday life, and for the many lessons he has taught both of us, each
day, along the journey we share as parents. We have seen him overcome
challenges we never thought he would. We have witnessed the
perseverance and dedication he has displayed in going after his dreams,
and we have full faith in his potential to be a productive member of
society and in contributing greatly to improving his community. This is
a journey we share with each of the fragile X families.
I am committed to increasing awareness of fragile X syndrome and to
providing individuals who are living with fragile X syndrome meaningful
educational and employment opportunities.
Representative Phil Hart and Representative Bill Delahunt have been
true champions of this issue on Capitol Hill for the past several
years, and I want to take this opportunity to thank both of them for
the work they have done and for the introduction of this legislation.
I would like to thank the Members of the House Energy and Commerce
Committee for favorably reporting this resolution to the House floor,
and I urge all Members to support this.
I reserve the balance of my time.
Mr. PALLONE. Madam Speaker, I yield such time as he may consume to
the sponsor of the legislation, the gentleman from Illinois (Mr. Hare).
I thank him for all that he has done to move this resolution to the
floor and to draw attention to fragile X.
Mr. HARE. I thank my friend from New Jersey.
Madam Speaker, I rise in strong support of House Resolution 611,
supporting the goals and ideals of Fragile X Awareness Day.
Madam Speaker, with 100,000 Americans affected and 1 million more at
risk, fragile X syndrome is the most commonly inherited cause of mental
impairment and autism. However, fragile X syndrome still remains a
largely unknown disorder and is often misdiagnosed.
Tomorrow, July 22, families, patients, and advocates will take part
in the 10th annual National Fragile X Awareness Day. Thanks to the
efforts of the National Fragile X Foundation to unite the fragile X
community, on Thursday, advocates all across the country will hold
events and fundraisers in their cities and communities to raise
awareness about this condition.
Madam Speaker, National Fragile X Awareness Day is an opportunity to
educate the public as well as the medical profession about this
disease. Increased awareness about this little known disease can
significantly reduce the incidence of fragile X and lead to quicker
diagnoses for families dealing with the disease. Growing awareness of
this condition is also critical to securing additional research funding
to create tomorrow's scientific breakthroughs to treat and ultimately
cure fragile X.
I introduced this resolution not only to support the goals and the
ideals of Fragile X Awareness Day but also to recognize fragile X
advocates who work tirelessly to increase the awareness. Together,
their voice is an invaluable
[[Page H5882]]
part of promoting public consciousness about fragile X syndrome, and it
is because of their commitment that we are closer to finding a cure.
Madam Speaker, I first learned of the fragile X syndrome as I was
leaving the floor and was walking back to my congressional office. I
looked at my schedule, and I saw I had a group of constituents who
wanted to talk to me about fragile X. I had no idea what fragile X was.
On the way to my office, I kept trying to think, what could this be?
I had the opportunity to meet Holly Roos and other parents. Holly
told me about her son and her daughter's battle with fragile X. The
family shared stories and photos, and it motivated me to get involved.
I started by participating in my first fragile X walk in Canton,
Illinois, 3 years ago. Three walks later, I am as committed today as I
was then to work to find a cure.
Because of Holly, Parker, Allison, and all of the people affected by
fragile X, I was inspired to establish the Fragile X Caucus, along with
Congressman Delahunt and my friend Congressman Harper. The caucus is
growing, and we are educating more Members daily about fragile X.
We have also successfully fought for more research funding for
fragile X at the National Institutes of Health and the Department of
Defense. We organized the first congressional briefing on fragile X. We
released a public service announcement, and we continue to make finding
a cure for fragile X syndrome a national priority.
I proudly serve on the caucus with two of the most dedicated Members
of Congress to the fragile X cause:
The co-chairman, Gregg Harper, is the parent of a child whom I've had
the opportunity to meet. What a wonderful young man. How proud you are
of him--his engaging smile and his willingness to come and to tour and
to be with his father. You can see the love between them and what a
wonderful and special young man he is.
For 15 years our friend Chairman Bill Delahunt has advocated on
behalf of the fragile X community, and we will certainly miss his
leadership on the caucus upon his retirement, but there is an old
saying: Do you think this is the end for you, Mr. Delahunt? This is
only the beginning. We are going to be asking more of you because Mr.
Delahunt is going to have more time to spend with us.
{time} 1320
Madam Speaker, Congress has an important role in raising awareness of
fragile X syndrome. It's my hope that this resolution, and the efforts
of the Fragile X Caucus, will provide greater awareness of fragile X. I
urge all of my colleagues to vote in support of House Resolution 611.
I want to thank Chairman Waxman and Chairman Pallone for working with
me to bring House Resolution 611 to the floor on the eve of Fragile X
Awareness Day.
Mr. HARPER. Madam Speaker, with special thanks to Congressman Hare
and Congressman Delahunt, I yield back the balance of my time.
Mr. PALLONE. Madam Speaker, I yield myself such time as I may
consume, and I will be brief.
I want to, first of all, express my support for House Resolution 611
and the goals and ideals of Fragile X Awareness Day and again thank all
three of the previous speakers: Mr. Hare, the prime sponsor; Mr.
Delahunt; and also Mr. Harper.
As we know, fragile X syndrome can result in impairments that range
from learning disabilities to more severe cognitive or intellectual
disabilities. And I wanted to mention that scientists and researchers
acknowledge a link between fragile X syndrome and autism or autistic-
like behaviors. In fact, up to one-third of all children diagnosed with
fragile X also have autism, and fragile X-associated disorders
encompass a spectrum of conditions that impact individuals and families
throughout the lifecycle. So it is really important that we put this
resolution to the floor.
Tomorrow, Thursday, July 22, we'll celebrate the 10th annual Fragile
X Awareness Day. Families, patients, and advocates across the country
will convene local events and fund-raisers to raise awareness of
fragile X-associated disorders.
I urge my colleagues to support this resolution.
I yield back the balance of my time.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from New Jersey (Mr. Pallone) that the House suspend the
rules and agree to the resolution, H. Res. 611, as amended.
The question was taken; and (two-thirds being in the affirmative) the
rules were suspended and the resolution, as amended, was agreed to.
A motion to reconsider was laid on the table.
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