[Congressional Record (Bound Edition), Volume 156 (2010), Part 10]
[House]
[Pages 13571-13573]
[From the U.S. 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 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

[[Page 13572]]

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 Hare 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 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

[[Page 13573]]

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.

                          ____________________