Expressing support for the designation of a National Prader-Willi Syndrome Awareness Month to raise awareness of and promote research into this challenging disorder.

I thank the gentleman for yielding.

Mr. Speaker, I rise in support of House Resolution 55, authored by myself and my colleague from the State of California, Congresswoman Jane Harman.

This resolution calls for the establishment of a National Prader- Willi Syndrome Awareness Month, and it encourages continued Federal research of this syndrome. Now, this syndrome is recognized as a common genetic cause of childhood obesity, and for too many children, it is an affliction which causes them not even to be able to reach their teens. Many of them don't reach their 20th birthday as a result of this malady.

Mr. Speaker, 7\1/2\ years ago I was in the position of most Members of this House and most Americans in that I had never heard of Prader- Willi syndrome. Then a little girl named Abby Porter was born. I can still remember

that day and the phone call that came telling me that Abby had arrived but that something was wrong. Abby was sleeping almost 24 hours a day, was unable to eat on her own, and had almost no muscle tone at all.

Thanks to the persistence and strong will of Abby's parents, she was sent to Children's Hospital in Denver where she underwent extensive testing. At 2 weeks of age we all learned that Abby had a genetic disorder called Prader-Willi syndrome.

Many of you are now asking what I asked on that day of the phone call. What is Prader-Willi syndrome? In short, it is a complex condition characterized by morbid obesity, by insatiable appetite, by poor muscle tone and failure to thrive during infancy, among many other maladies. Twenty years ago a child with Prader-Willi syndrome was likely to die of morbid obesity before they reached adulthood. Most of these children were either never diagnosed or diagnosed later in life when treatment was far less effective.

Abby Porter is actually one of the lucky ones, as she received a very early diagnosis. As a result of this early diagnosis she was able to begin human growth hormone treatments at the age of 3 months. A relatively new treatment for Prader-Willi at the time of her birth, growth hormone enabled Abby to begin building the muscle tone she needed to eat, to hold up her head, to sit up, crawl, and finally to walk. As a result she was able to reach all of her developmental milestones at roughly the appropriate times. She was also able to develop cognitively at a more normal rate than she would have without this treatment.

Abby and I want every child with Prader-Willi syndrome to have this same opportunity. We want to increase awareness of this genetic disorder among health care providers and pediatricians and parents and teachers and communities. We want children to get diagnosed early so that they can begin immediate treatment.

We want parents to be able to find out the information that they need to make decisions about the treatment and development of their children. We want teachers to understand the cognitive and emotional struggles that come with Prader-Willi and that must be dealt with in order for these children to learn.

We want neighbors and community members to learn about this syndrome so that they will understand the actions and behavior of some of the children with Prader-Willi; thus, they will not reject them outright and will instead teach their own children about the acceptance of differences.

Abby and I want these families with Prader-Willi children to know that the families are not alone in this fight to search for cures and treatments that will improve the future of their children.

For that reason, we are both proud today to see this House call for a National Prader-Willi Syndrome Awareness Month and to express support for further research in this disorder.

I want to again thank my colleague, Congresswoman Jane Harman from California, for her support and efforts on behalf of this resolution. I urge all my colleagues to support this bill.

Mr. Speaker, I move to suspend the rules and agree to the resolution (H. Res. 55) expressing support

for the designation of a National Prader-Willi Syndrome Awareness Month to raise awareness of and promote research into this challenging disorder.

Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days in which to revise and extend their remarks and to include extraneous material into the Record.

Mr. Speaker, I yield myself such time as I may consume.

Mr. Speaker, I rise today in support of House Resolution 55. This resolution supports raising awareness and educating the public about Prader-Willi syndrome and expresses the support for designating National Prader-Willi Syndrome Awareness Month.

Prader-Willi syndrome is a genetic disorder that occurs in approximately 1 in every 15,000 births. Individuals with this syndrome have lower metabolic rates and lack normal hunger and satiety cues. The combination of these factors results in morbid obesity and associated complications if gone untreated.

Individuals with Prader-Willi syndrome are also affected by nonobesity-related conditions such as cognitive and learning disabilities and some behavioral difficulties. The link between Prader- Willi syndrome and obesity is one that cannot be ignored. Obesity is one of the fastest-growing public health challenges in the United States.

The Centers for Disease Control and Prevention estimates that 16 percent of American children and one-third of American adults are obese. That's an astounding fact.

A recently released report supported by the United Health Foundation, the American Public Health Association, and the Partnership for Prevention concluded that, if current trends continue, over 100 million American adults will be obese by 2018. This would translate to over $300 billion of health care costs attributable to obesity if the rates continue to increase at current trends.

As my colleagues are aware, obesity is a complex health issue. Behavioral, environmental, and genetic factors also contribute to this epidemic. Most often we talk about eating a healthy diet and exercising. In recent months, I am proud of how we have prioritized investments in community-level prevention and wellness activities.

Interventions in schools, workplaces, and other settings are essential to reinforce and facilitate individual efforts to maintain a healthy weight. The resolution we are considering today presents us with an opportunity to focus on how genes affect obesity.

I am pleased to join my colleagues in drawing attention to the Prader-Willi syndrome. I urge passage this resolution.

I want to thank my colleagues from California, Congressman Royce and Congresswoman Harman, for their leadership on this issue.

I reserve the balance of my time.

I am pleased now to yield whatever time she may consume to my colleague and friend from California, Jane Harman.

I wish to commend the personal commitment of our colleagues from California, Congressman Royce and Congresswoman Jane Harman, and I urge support for this resolution.

I yield back the balance of our time.

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.

Mr Speaker, I rise before you today in support of H. Res. 55, ``Expressing support for the designation of a National Prader-Willi Syndrome Awareness Month to raise awareness of and promote research into this challenging disorder.'' I would like thank my colleague, Rep. Edward Royce, for introducing this act of solidarity, as well as the co-sponsors.

Prader-Willi syndrome is a complex genetic disorder that occurs in approximately 1 out of every 15,000 births, and is the most commonly known genetic cause of life-threatening obesity.

It affects males and females with equal frequency and affects all races and ethnicities, causing an extreme and insatiable appetite, often resulting in morbid obesity, which is the major cause of death for individuals with the syndrome. The syndrome also causes cognitive and learning disabilities, and behavioral difficulties, such as obsessive-compulsive disorder and difficulty controlling emotions.

The hunger, metabolic, and behavioral characteristics of Prader-Willi syndrome force affected individuals to require constant and lifelong supervision in a controlled environment; Studies have shown that there is a high morbidity and mortality rate for individuals with Prader- Willi syndrome, and there is no known cure.

Early diagnosis allows families to access treatment, intervention services, and support from health professionals, advocacy organizations, and other families who are dealing with the syndrome. Recently discovered treatments, such as human growth hormone, are improving the quality of life for individuals with the syndrome and offer new hope to families, but many difficult symptoms associated with Prader-Willi syndrome remain untreated.

Increased research into this disease can lead to a better understanding of the disorder, more effective treatments, and an eventual cure for Prader-Willi syndrome, and is likely to improve our understanding of common public health concerns, including childhood obesity and mental health.

That is why I join this body in supporting raised awareness and educating the public about Prader-Willi syndrome. I also join in applauding the efforts of advocates and organizations that encourage awareness, promote

research, and provide education, support, and hope to those impacted by Prader-Willi syndrome.

This resolution does all this, as well as recognizing the commitment of parents, families, researchers, health professionals, and others dedicated to finding an effective treatment and eventual cure for Prader-Willi syndrome; supporting increased funding for research into the causes, treatment, and cure for Prader-Willi syndrome; and expressing support for the designation of a National Prader-Willi Syndrome Awareness Month.

Let me first commend Mrs. Capps, who, as a registered nurse, has brought so much understanding and depth to our ongoing negotiations on health care in the Energy and Commerce Committee.

Second, let me commend a good friend and frequent partner, Mr. Royce, whose focus on this issue and personal compassion on behalf of his friend, Abby, and enormously caring staff, have brought this issue to my attention.

It resonates in my California congressional district, where there is an incredible community of activists who are committed to increasing awareness and supporting research on Prader-Willi syndrome. Two of those activists, Tom and Renay Compere, are parents of a child with PWS. They have brought other Prader-Willi families together with groups of students, teachers, and other members of the community to spread awareness and raise funds to combat this devastating disease.

Tom Compere says, ``The thing that has kept us going over the years has been the optimism that a cure for PWS will be found and that our son will have a normal life. What a concept. A normal life was something, until recently, that I took for granted.''

That's the goal of this resolution. By increasing awareness and promoting research at the national level, we can give the Compere family and thousands of families like them a chance to lead a normal life.

Two years ago, Mr. Speaker, I attended the annual walkathon for Prader-Willi research in Mar Vista, a wonderful community in my district. The warmth and excitement of the children I met there was touching, especially in the face of the challenges they face on a daily basis.

Prader-Willi patients suffer, as you have heard, from cognitive disabilities, poor muscle tone, and constant feelings of hunger. They often look different from other children, which makes it difficult to fit in or be accepted as a normal kid. Some cutting-edge treatments, like the ones Abby received, can improve the physical development of children with Prader-Willi so they can fit in, but this is contingent on early diagnosis and treatment, and that often doesn't happen.

By passing H. Res. 55 and raising the profile of this disease, this House can give these children better odds at doing something most of us take for granted: Living a normal life.

I urge passage of the resolution and again commend my friends from California for their role.

I yield myself as much time as I may consume.

Mr. Speaker, I rise in support of House Resolution 55 and encourage the designation of National Prader-Willi Syndrome Awareness Month.

Prader-Willi syndrome is a complex genetic disorder that can cause life-threatening symptoms such as an extreme and insatiable appetite. Often resulting in morbid obesity, Prader-Willi syndrome occurs in males and females equally and in all races. Estimates of the prevalence of Prader-Willi syndrome vary, with the most likely figure being 1 out of every 15,000 children.

Children with PWS have sweet and loving personalities, but they are also characterized by weight-control issues and motor development delays, along with some behavior problems and unique medical issues. PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion requires constant supervision on the part of the family members, along with regular attention to many of the other difficult symptoms.

It is the commitment of researchers and health professionals that has led to effective treatments and, hopefully, an eventual cure for the families afflicted by this disorder.

I would like to thank Representative Royce from California for his commitment to raising awareness about Prader-Willi syndrome. I encourage all of my colleagues to vote for this resolution.

At this time, I yield to the gentleman from California (Mr. Royce).

We have no further speakers and, therefore, encourage the passage of this resolution.

I yield back the balance of my time.