Expressing support for the designation of May 15, 2023, as "Prader-Willi Syndrome Awareness Day" to raise awareness of and promote research on the disorder.

IV 118TH CONGRESS 1ST SESSION H. RES. 404 Expressing support for the designation of May 15, 2023, as ‘‘Prader-Willi Syndrome Awareness Day’’ to raise awareness of and promote research on the disorder. IN THE HOUSE OF REPRESENTATIVES MAY 15, 2023 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, 2023, 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— VerDate Sep 11 2014 02:35 May 16, 2023 Jkt 039200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6300 E:\BILLS\HR404.IH HR404 pbinns on DSKJLVW7X2PROD with $$_JOB 2 •HRES 404 IH (1) males and females with equal frequency; and (2) all races and ethnicities; Whereas PWS causes an extreme and insatiable appetite, often resulting in severe obesity; Whereas severe obesity is the major cause of death for indi- viduals with PWS; Whereas one of the main symptoms of PWS is the inability to control eating and constant hunger, and other symp- toms include low muscle tone and poor feeding as an in- fant, delays in intellectual development, and difficulty controlling emotions; Whereas PWS causes cognitive and learning disabilities and behavioral difficulties, including obsessive-compulsive dis- order and difficulty controlling emotions; Whereas PWS affects many aspects of the person’s life, in- cluding eating, behavior and mood, physical growth, and intellectual development; Whereas PWS can affect hormone production and cause other health complications; Whereas PWS can lead to obesity and related complications such as heart issues, diabetes, and high blood pressure; Whereas studies have shown that individuals with PWS have a high morbidity and mortality rate; Whereas individuals with PWS, like many other rare dis- orders, experience challenges with obtaining a diagnosis, limited treatment options, and difficulty finding and ac- cessing treatment centers and physicians with expertise in PWS; Whereas there is no known cure for PWS; VerDate Sep 11 2014 02:35 May 16, 2023 Jkt 039200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6300 E:\BILLS\HR404.IH HR404 pbinns on DSKJLVW7X2PROD with $$_JOB 3 •HRES 404 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— VerDate Sep 11 2014 02:35 May 16, 2023 Jkt 039200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6300 E:\BILLS\HR404.IH HR404 pbinns on DSKJLVW7X2PROD with $$_JOB 4 •HRES 404 IH (1) normalizing life for people with PWS and their families; (2) improving communication and education; and (3) acting as a lifetime advocate for affected individ- uals; Whereas the association also supports research, interdiscipli- nary communication, and increased professional knowl- edge of treatments; and Whereas ‘‘Prader-Willi Syndrome Awareness Day’’ is ex- pected to be observed in the United States for years to come, providing hope and information for patients, care- givers, and families around the country: Now, therefore, be it Resolved, That the House of Representatives— 1 (1) supports the designation of ‘‘Prader-Willi 2 Syndrome Awareness Day’’; 3 (2) applauds the efforts of advocates and orga- 4 nizations that encourage awareness, promote re- 5 search, and provide education, support, and hope to 6 those impacted by Prader-Willi syndrome; 7 (3) recognizes the commitment of parents, fam- 8 ilies, researchers, health professionals, and others 9 dedicated to finding an effective treatment and even- 10 tual cure for Prader-Willi syndrome; and 11 (4) recognizes the importance of, with respect 12 to Prader-Willi syndrome— 13 (A) improving awareness and educating 14 the public; 15 VerDate Sep 11 2014 02:35 May 16, 2023 Jkt 039200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\HR404.IH HR404 pbinns on DSKJLVW7X2PROD with $$_JOB 5 •HRES 404 IH (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 VerDate Sep 11 2014 02:35 May 16, 2023 Jkt 039200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6301 E:\BILLS\HR404.IH HR404 pbinns on DSKJLVW7X2PROD with $$_JOB