Supporting the goals and ideals of "Fragile X Awareness Day".

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 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.

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.

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.

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.

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.

Madam Speaker, with special thanks to Congressman Hare and Congressman Delahunt, I yield back the balance of my time.

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.

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.

Madam Speaker, at this time I would like to yield, initially, such time as he may consume to the gentleman from Massachusetts (Mr. Delahunt).

Madam Speaker, I reserve the balance of my time.

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.

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.