[Congressional Record Volume 155, Number 189 (Monday, December 14, 2009)]
[Extensions of Remarks]
[Pages E2993-E2994]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                NATIONAL PRADER-WILLI SYNDROME AWARENESS

                                 ______
                                 

                               speech of

                        HON. SHEILA JACKSON-LEE

                                of texas

                    in the house of representatives

                       Tuesday, December 8, 2009

  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

[[Page E2994]]

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.

                          ____________________