[Congressional Record (Bound Edition), Volume 155 (2009), Part 22]
[House]
[Pages 29877-29880]
[From the U.S. Government Publishing Office, www.gpo.gov]




             NATIONAL PRADER-WILLI SYNDROME AWARENESS MONTH

  Mrs. CAPPS. 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.
  The Clerk read the title of the resolution.
  The text of the resolution is as follows:

                               H. Res. 55

       Whereas 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;
       Whereas Prader-Willi syndrome affects males and females 
     with equal frequency and affects all races and ethnicities;
       Whereas Prader-Willi syndrome causes an extreme and 
     insatiable appetite, often resulting in morbid obesity, which 
     is the major cause of death for individuals with the 
     syndrome;

[[Page 29878]]

       Whereas Prader-Willi syndrome also causes cognitive and 
     learning disabilities, and behavioral difficulties, such as 
     obsessive-compulsive disorder and difficulty controlling 
     emotions;
       Whereas the hunger, metabolic, and behavioral 
     characteristics of Prader-Willi syndrome force affected 
     individuals to require constant and lifelong supervision in a 
     controlled environment;
       Whereas studies have shown that there is a high morbidity 
     and mortality rate for individuals with Prader-Willi 
     syndrome;
       Whereas there is no known cure for Prader-Willi syndrome;
       Whereas early diagnosis of Prader-Willi syndrome allows 
     families to access treatment, intervention services, and 
     support from health professionals, advocacy organizations, 
     and other families who are dealing with the syndrome;
       Whereas 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;
       Whereas increased research into Prader-Willi syndrome can 
     lead to a better understanding of the disorder, more 
     effective treatments, and an eventual cure for Prader-Willi 
     syndrome;
       Whereas increased research into Prader-Willi syndrome is 
     likely to improve our understanding of common public health 
     concerns, including childhood obesity and mental health; and
       Whereas advocacy organizations have designated May as 
     Prader-Willi Syndrome Awareness Month: Now, therefore, be it
       Resolved, That the House of Representatives--
       (1) supports raising awareness and educating the public 
     about Prader-Willi syndrome;
       (2) applauds the efforts of advocates and organizations 
     that encourage awareness, promote research, and provide 
     education, support, and hope to those impacted by Prader-
     Willi syndrome;
       (3) recognizes the commitment of parents, families, 
     researchers, health professionals, and others dedicated to 
     finding an effective treatment and eventual cure for Prader-
     Willi syndrome;
       (4) supports increased funding for research into the 
     causes, treatment, and cure for Prader-Willi syndrome; and
       (5) expresses support for the designation of a National 
     Prader-Willi Syndrome Awareness Month.

  The SPEAKER pro tempore. Pursuant to the rule, the gentlewoman from 
California (Mrs. Capps) and the gentleman from Nebraska (Mr. Terry) 
each will control 20 minutes.
  The Chair recognizes the gentlewoman from California.


                             General Leave

  Mrs. CAPPS. 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.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentlewoman from California?
  There was no objection.
  Mrs. CAPPS. 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.
  Mr. TERRY. 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).
  Mr. ROYCE. 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.

[[Page 29879]]

  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.
  Mrs. CAPPS. I am pleased now to yield whatever time she may consume 
to my colleague and friend from California, Jane Harman.
  Ms. HARMAN. 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.
  Mr. TERRY. We have no further speakers and, therefore, encourage the 
passage of this resolution.
  I yield back the balance of my time.
  Ms. JACKSON-LEE of Texas. 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.
  Mrs. CAPPS. 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.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentlewoman from California (Mrs.

[[Page 29880]]

Capps) that the House suspend the rules and agree to the resolution, H. 
Res. 55.
  The question was taken.
  The SPEAKER pro tempore. In the opinion of the Chair, two-thirds 
being in the affirmative, the ayes have it.
  Mrs. CAPPS. 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 of rule XX and the 
Chair's prior announcement, further proceedings on this motion will be 
postponed.
  The point of no quorum is considered withdrawn.

                          ____________________