119-hres253

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 253 Introduced in House

    (IH) ]

<DOC>

119th CONGRESS
 1st Session
H. RES. 253

 Expressing support for the designation of May 15, 2025, as ``Prader-
 Willi Syndrome Awareness Day'' to raise awareness of and promote 
 research on the disorder.

_______________________________________________________________________

 IN THE HOUSE OF REPRESENTATIVES

 March 25, 2025

 Mr. Tonko (for himself and Ms. Salazar) submitted the following 
 resolution; which was referred to the Committee on Energy and Commerce

_______________________________________________________________________

 RESOLUTION

 Expressing support for the designation of May 15, 2025, as ``Prader-
 Willi Syndrome Awareness Day'' to raise awareness of and promote 
 research on the disorder.

Whereas Prader-Willi syndrome

    (PWS) is a rare genetic disorder and the most 
 common of the genetic disorders that cause life-threatening obesity in 
 children;
Whereas PWS usually results from problems on chromosome 15;
Whereas PWS is a complex genetic disorder that occurs in approximately 1 out of 
 every 15,000 births;
Whereas, in the United States, there are approximately 10,000 to 20,000 living 
 individuals with PWS;
Whereas PWS affects--

    (1) males and females with equal frequency; and

    (2) all races and ethnicities;

Whereas PWS causes an extreme and insatiable appetite, often resulting in severe 
 obesity;
Whereas severe obesity is the major cause of death for individuals with PWS;
Whereas one of the main symptoms of PWS is the inability to control eating and 
 constant hunger, and other symptoms include low muscle tone and poor 
 feeding as an infant, delays in intellectual development, and difficulty 
 controlling emotions;
Whereas PWS causes cognitive and learning disabilities and behavioral 
 difficulties, including obsessive-compulsive disorder and difficulty 
 controlling emotions;
Whereas PWS affects many aspects of the person's life, including eating, 
 behavior and mood, physical growth, and intellectual development;
Whereas PWS can affect hormone production and cause other health complications;
Whereas PWS can lead to obesity and related complications such as heart issues, 
 diabetes, and high blood pressure;
Whereas studies have shown that individuals with PWS have a high morbidity and 
 mortality rate;
Whereas individuals with PWS, like many other rare disorders, experience 
 challenges with obtaining a diagnosis, limited treatment options, and 
 difficulty finding and accessing treatment centers and physicians with 
 expertise in PWS;
Whereas there is no known cure for PWS;
Whereas early diagnosis of PWS allows families to access treatment, intervention 
 services, and support from health professionals, advocacy organizations, 
 and other families who are dealing with PWS;
Whereas discovered treatments, including the use of 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 
 PWS remain untreated;
Whereas increased research into PWS--

    (1) may lead to a better understanding of the disorder, more effective 
treatments, and an eventual cure for PWS; and

    (2) is likely to lead to a better understanding of common public health 
concerns, including childhood obesity and mental health;

Whereas there is a critical need for research and development to advance 
 treatments for PWS;
Whereas studies have shown that individuals with PWS have a high morbidity and 
 mortality rate;
Whereas the Prader-Willi Syndrome Association, a nonprofit organization 
 established in 1975, provides parents and health care professionals with 
 a national and international network of information, support services, 
 and research endeavors to expressly meet the needs of children and 
 adults with PWS and their families;
Whereas the organization comprises parents, professionals, and other interested 
 individuals who are taking active roles in improving the lives of people 
 with PWS;
Whereas the goals of the organization include--

    (1) normalizing life for people with PWS and their families;

    (2) improving communication and education; and

    (3) acting as a lifetime advocate for affected individuals;

Whereas the association also supports research, interdisciplinary communication, 
 and increased professional knowledge of treatments; and
Whereas ``Prader-Willi Syndrome Awareness Day'' is expected to be observed in 
 the United States for years to come, providing hope and information for 
 patients, caregivers, and families around the country: Now, therefore, 
 be it
 Resolved, That the House of Representatives--

    (1) supports the designation of ``Prader-Willi Syndrome 
 Awareness Day'';

    (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; and

    (4) recognizes the importance of, with respect to Prader-
 Willi syndrome--
        (A) improving awareness and educating the public;
        (B) encouraging accurate and early diagnosis;
            (C) advancing research;
            (D) developing new treatments, diagnostics, and 
 cures; and
        (E) identifying regulatory pathways for drug 
 development of rare diseases like Prader-Willi 
 syndrome.
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