Support H. Res.1386 for National Prader-Willi Month and More Research Funding

PWS Awareness Month has occurred in May in recent years. Originally PWSA (USA) declared PWS Awareness Week, but a few years ago we expanded it to a month in order to better promote awareness and provide more time for holding local events. Various governmental bodies including, this year, the New York State Assembly have recognized the event, but it has never been federally declared. Congressional recognition could be a major step forward in increasing awareness of PWS. Moreover, House support for increased research funding (even in a non-binding resolution) would be a significant step as well.

Those interested in advocating on behalf of this resolution can contact their Representatives through www.house.gov , which permits you to look up your Representative by name or zip code. . . .

This resolution is a promising development for those seeking to increase awareness of PWS and to increase funding for research. Parents and others may want to urge their U.S. Representatives to support both the resolution and increased federal research funding on PWS

A mother from Tennessee, Tymna Lee, has taken the resolution below to her local Representative in congress and is soliciting signatures with this online petition at www.thepetitionsite.com/1/prader-willi-awareness-house-resolution-1386

Ms. Lee states: "WE MUST UNITE ALL OVER OUR COUNTRY AND LET OUR VOICES BE HEARD."

Here is an exact copy of the resolution as it was presented to the Committee of Energy and Commerce.

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

H. Res 1386 IH
110th CONGRESS
2d Session

H. RES. 1386

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

IN THE HOUSE OF REPRESENTATIVES

July 29, 2008
Mr. ROYCE (for himself and Ms. HARMAN) submitted the following resolution; which was referred to the Committee on Energy and Commerce

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RESOLUTION

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

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 ;

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, many difficult symptoms associated with Prader -Willi Symptoms 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 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, 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 Awareness Month.

 

edited: 11/17/2010