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AJR119
ASSEMBLY JOINT RESOLUTION
No. 119
STATE OF NEW JERSEY
222nd LEGISLATURE
�
INTRODUCED FEBRUARY 19, 2026
Sponsored by:
Assemblywoman� LINDA S. CARTER
District 22 (Somerset and Union)
Assemblyman� JAMES J. KENNEDY
District 22 (Somerset and Union)
Assemblyman� CRAIG J. COUGHLIN
District 19 (Middlesex)
Senator� NICHOLAS P. SCUTARI
District 22 (Somerset and Union)
Co-Sponsored by:
Assemblywoman Rowan, Assemblymen Scharfenberger, Barlas,
Assemblywoman Fantasia, Assemblyman Azzariti Jr., Assemblywoman Speight,
Assemblymen Clifton, Danielsen, McGuckin, Assemblywoman Dunn, Assemblymen
Wainstein, Moen, Angelozzi, Assemblywoman Donlon, Assemblyman Kearney,
Assemblywomen Reynolds-Jackson, Lopez, Assemblyman Karabinchak, Assemblywoman
Peterpaul, Assemblymen Sauickie, S.Kean, Peterson, Onyema, Senators Polistina
and Bramnick
SYNOPSIS
���� Designates November 7 of each year as �Shwachman
Diamond Syndrome Awareness Day� in NJ.
CURRENT VERSION OF TEXT
���� As introduced.
��
A Joint Resolution
designating
November 7 of each year as �Shwachman Diamond Syndrome Awareness Day� in New
Jersey.
W
HEREAS
,
Shwachman-Diamond
syndrome (SDS) is a rare genetic disorder that primarily affects a diagnosed
individual's bone marrow, pancreas, and skeleton; and
W
HEREAS
,
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; and
W
HEREAS
,
Typically, the parents
of the affected individual do not show signs and symptoms of SDS; and
W
HEREAS
,
An estimated 2000
Americans are living with SDS; and
W
HEREAS
,
This rare condition
occurs in approximately 1 in 80,000 newborns; and
W
HEREAS
,
Infants with SDS are
born with the condition and develop symptoms usually by 4 to 6 months of age;
and
W
HEREAS
,
Individuals diagnosed
with SDS often develop liver dysfunction, dental problems, developmental
delays, and delayed puberty; and
W
HEREAS
,
One of the main
characteristics of SDS is bone marrow dysfunction; and
�
W
HEREAS
,
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; and
W
HEREAS
,
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
; and
W
HEREAS
,
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; and
W
HEREAS
,
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; and
W
HEREAS
,
With modern treatment
options and ongoing management, most children diagnosed with SDS lead normal
lives, although continued medications and regular monitoring are usually
required; and
W
HEREAS
,
Because the signs and
symptoms of SDS are variable and can be mild in some affected individuals, the
condition is underdiagnosed; and
W
HEREAS
,
Diagnosis is based on a
combination of clinical symptoms, blood tests, stool tests for digestive enzyme
levels, and confirmation through genetic testing; and
W
HEREAS
,
Treatment typically
involves managing symptoms, such as using
pancreatic enzyme replacement therapy
, nutritional
support, and medications that stimulate white blood cell production; and
W
HEREAS
,
There is no cure for
SDS.� Current treatment options only lessen symptoms and treat complications;
and
W
HEREAS
,
SDS reduces life
expectancy by more than 30 years and many patients die as infants, kids, or
teens due to SDS-related complications; and
W
HEREAS
,
Regular monitoring is
essential to identify any progression to more serious bone marrow conditions;
and
W
HEREAS
,
While there is no cure
for SDS, early diagnosis and multidisciplinary care can significantly improve the
quality of life for diagnosed individuals; and
W
HEREAS
,
As a result of its rare
nature, SDS is not widely known. This has led to limited research and
understanding of the disease
;
and
W
HEREAS
,
It is appropriate for the State of New Jersey 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 State, local, and national levels to enhance
research into treating this disease; now, therefore,
����
Be It
Resolved
by the Senate and General Assembly of
the State of New Jersey:
���� 1.� November 7 of each year
shall be designated as �Shwachman Diamond Syndrome Awareness Day� to increase
awareness of this heritable rare genetic disorder and
its
impact on the residents of this State, and to promote further research into effective
treatments for this disease.
�
���� 2.� The Governor is
respectively requested to annually issue a proclamation recognizing November 7
of each year as �Shwachman Diamond Syndrome Awareness Day� in New Jersey, and
call upon public officials and the citizens of this State to observe the day
with appropriate activities and programs.
���� 3. This act shall take effect
immediately.
STATEMENT
���� 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 2000 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.