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SJR143 SHH Statement 6/11/26
SENATE HEALTH, HUMAN SERVICES AND SENIOR CITIZENS COMMITTEE
STATEMENT TO
SENATE
JOINT RESOLUTION No. 143
STATE
OF NEW JERSEY
DATED:
�JUNE
11, 2026
����� The Senate Health, Human Services and Senior Citizens
Committee reports favorably Senate Joint Resolution No. 143.
����� This resolution designates November 7 of each year as
�Shwachman Diamond Syndrome Awareness Day.�
����� Shwachman-Diamond syndrome (SDS) is a genetic disorder
that primarily affects a diagnosed individual�s bone marrow, pancreas, and
skeleton.� 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.� This
rare condition occurs in approximately 1 in 80,000 newborns.� Infants with SDS
are born with the condition and develop symptoms usually by 4 to 6 months of
age.� With modern treatment options and ongoing management, most children with
SDS lead normal lives, although continued medications and regular monitoring
through hospital visits are usually required.
����� One of the main characteristics of SDS is bone marrow
dysfunction.� 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.� In addition to producing too few
white blood cells, some people diagnosed with SDS may have low levels of red
blood cells and are at increased risk for developing blood disorders such as
acute myeloid leukemia.� Another hallmark of SDS is
pancreatic insufficiency
, where the
pancreas fails to produce enough digestive enzymes.� This leads to problems
with absorbing fats and nutrients, resulting in chronic diarrhea, poor weight
gain, and failure to thrive, especially in infancy and early childhood.�
Skeletal abnormalities affecting the growth plates of bones are also common in
individuals with SDS, often leading to short stature and orthopedic problems
with their hips and knees.
����� An estimated 2,000 Americans are living with SDS.�
Because the signs and symptoms of SDS are variable and can be mild in some
affected individuals, the condition is underdiagnosed.� Treatment typically
involves managing symptoms, such as using
pancreatic enzyme replacement therapy
, nutritional
support, and medications that stimulate white blood cell production.� There is
no cure for SDS.� Current treatment options only lessen symptoms or treat
complications.� As a result of its rare nature, SDS is not widely known. �This
has led to limited research and understanding of the disease.
����� Recognizing November 7 of each year as �Shwachman
Diamond Syndrome Awareness Day� in New Jersey will help increase awareness of
this heritable rare genetic disorder and
its impact
on the residents of this State, as well as promote continued research into
finding a treatment for this condition.