[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 1133 Introduced in House (IH)]

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119th CONGRESS
  2d Session
H. RES. 1133

  Designating November 7 of each year as ``Shwachman Diamond Syndrome 
                            Awareness Day''.


_______________________________________________________________________


                    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.
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