HRES 1133

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IN THE HOUSE OF REPRESENTATIVES

March 24, 2026

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

RESOLUTION

Designating November 7 of each year as “Shwachman Diamond Syndrome Awareness Day”.

Whereas Shwachman-Diamond syndrome (SDS) is a rare genetic disorder that primarily affects a diagnosed individual’s bone marrow, pancreas, and skeleton; Whereas SDS is inherited in an autosomal recessive manner, meaning a person must inherit two faulty copies of the gene, one from each parent, for the disorder to develop; Whereas, typically, the parents of the affected individual do not show signs and symptoms of SDS; Whereas an estimated 2,000 Americans are living with SDS; Whereas this rare condition occurs in approximately 1 in 80,000 newborns; Whereas infants with SDS are born with the condition and develop symptoms usually by 4 to 6 months of age; Whereas individuals diagnosed with SDS often develop liver dysfunction, dental problems, developmental delays, and delayed puberty; Whereas one of the main characteristics of SDS is bone marrow dysfunction; Whereas bone marrow dysfunction leads to the production of too few white blood cells, which are essential for fighting infections, making individuals more prone to frequent or severe illnesses; Whereas, in addition to having too few white blood cells, individuals with SDS may also have low levels of red blood cells, which increases their risk of developing blood disorders such as acute myeloid leukemia; Whereas another hallmark of SDS is pancreatic insufficiency, in which the pancreas does not produce enough digestive enzymes. This often causes problems absorbing fats and nutrients, leading to chronic diarrhea, poor weight gain, and failure to thrive, especially during infancy and early childhood; Whereas skeletal abnormalities affecting the growth plates of bones are also common in individuals diagnosed with SDS, often leading to short stature and orthopedic problems with their hips and knees; Whereas, with modern treatment options and ongoing management, most children diagnosed with SDS lead normal lives, although continued medications and regular monitoring are usually required; Whereas, because the signs and symptoms of SDS are variable and can be mild in some affected individuals, the condition is underdiagnosed; Whereas diagnosis is based on a combination of clinical symptoms, blood tests, stool tests for digestive enzyme levels, and confirmation through genetic testing; Whereas treatment typically involves managing symptoms, such as using pancreatic enzyme replacement therapy, nutritional support, and medications that stimulate white blood cell production; Whereas there is no cure for SDS. Current treatment options only lessen symptoms and treat complications; Whereas SDS reduces life expectancy by more than 30 years and many patients die as infants, kids, or teens due to SDS-related complications; Whereas regular monitoring is essential to identify any progression to more serious bone marrow conditions; Whereas, while there is no cure for SDS, early diagnosis and multidisciplinary care can significantly improve the quality of life for diagnosed individuals; Whereas, as a result of its rare nature, SDS is not widely known. This has led to limited research and understanding of the disease; Whereas it is appropriate to improve public awareness and understanding of this rare genetic condition, encourage support for those individuals who have been afflicted by SDS, and promote more initiatives at the national, state, and local levels to enhance research into treating this disease; and Whereas November 7th, 2026, would be an appropriate date to designate “Shwachman-Diamond Syndrome Awareness Day”: Now, therefore, be it Resolved, That the House of Representatives—

(1) Supports the designation of “Shwachman Diamond Syndrom Awareness Day” to increase awareness of this heritable rare genetic disorder and its impace on the residents of this nation, and to promote further research into effective treatments for this disease.

(2) This act shall take effect immediately. <all>