IV
119THCONGRESS
1
STSESSION 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
MARCH25, 2025
Mr. T
ONKO(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 dis-
order 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—
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•HRES 253 IH
(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 indi-
viduals with PWS;
Whereas one of the main symptoms of PWS is the inability
to control eating and constant hunger, and other symp-
toms include low muscle tone and poor feeding as an in-
fant, delays in intellectual development, and difficulty
controlling emotions;
Whereas PWS causes cognitive and learning disabilities and
behavioral difficulties, including obsessive-compulsive dis-
order and difficulty controlling emotions;
Whereas PWS affects many aspects of the person’s life, in-
cluding 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 dis-
orders, experience challenges with obtaining a diagnosis,
limited treatment options, and difficulty finding and ac-
cessing treatment centers and physicians with expertise
in PWS;
Whereas there is no known cure for PWS;
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•HRES 253 IH
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 in-
dividuals with the syndrome and offer new hope to fami-
lies, but many difficult symptoms associated with PWS
remain untreated;
Whereas increased research into PWS—
(1) may lead to a better understanding of the dis-
order, 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 obe-
sity 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 inter-
national network of information, support services, and re-
search 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—
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(1) normalizing life for people with PWS and their
families;
(2) improving communication and education; and
(3) acting as a lifetime advocate for affected individ-
uals;
Whereas the association also supports research, interdiscipli-
nary communication, and increased professional knowl-
edge of treatments; and
Whereas ‘‘Prader-Willi Syndrome Awareness Day’’ is ex-
pected to be observed in the United States for years to
come, providing hope and information for patients, care-
givers, and families around the country: Now, therefore,
be it
Resolved, That the House of Representatives— 1
(1) supports the designation of ‘‘Prader-Willi 2
Syndrome Awareness Day’’; 3
(2) applauds the efforts of advocates and orga-4
nizations that encourage awareness, promote re-5
search, and provide education, support, and hope to 6
those impacted by Prader-Willi syndrome; 7
(3) recognizes the commitment of parents, fam-8
ilies, researchers, health professionals, and others 9
dedicated to finding an effective treatment and even-10
tual cure for Prader-Willi syndrome; and 11
(4) recognizes the importance of, with respect 12
to Prader-Willi syndrome— 13
(A) improving awareness and educating 14
the public; 15
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(B) encouraging accurate and early diag-1
nosis; 2
(C) advancing research; 3
(D) developing new treatments, 4
diagnostics, and cures; and 5
(E) identifying regulatory pathways for 6
drug development of rare diseases like Prader- 7
Willi syndrome. 8
Æ
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