Assembly Resolution No. 937

BY: M. of A. Rules (McDonald)

MEMORIALIZING Governor Andrew M. Cuomo to proclaim
October 5, 2020, as Peroxisomal Disorder Awareness
Day in the State of New York, in conjunction with
the observance of National Peroxisomal Disorder
Awareness Day

WHEREAS, It is the custom of this Legislative Body to recognize
official days that are set aside to increase awareness of serious
illnesses that affect the lives of citizens of New York State; and

WHEREAS, Attendant to such concern, and in full accord with its
long-standing traditions, it is the sense of this Legislative Body to
memorialize Governor Andrew M. Cuomo to proclaim October 5, 2020, as
Peroxisomal Disorder Awareness Day in the State of New York, in
conjunction with the observance of National Peroxisomal Disorder
Awareness Day; and

WHEREAS, Peroxisomal Disorder Awareness Day was established to raise
public awareness and understanding of peroxisomal biogenesis
disorder-Zellweger spectrum disorder and the related single enzyme
deficiencies, which are rare, terminal, genetic diseases impacting
children; and

WHEREAS, Zellweger spectrum disorders are also known as peroxisome
biogenesis disorders (PBDs), a group of disorders characterized by the
failure of the body to produce peroxisomes that function properly; and

WHEREAS, Peroxisomes are very small, membrane-bound structures
within the gel-like fluid (cytoplasm) of cells that play a vital role in
numerous biochemical processes in the body; and

WHEREAS, In addition, Peroxisomal Disorder Awareness Day will help
to foster understanding of the impact of peroxisomal biogenesis
disorder-Zellweger spectrum disorder and the related single enzyme
deficiencies have on patients and their families; and

WHEREAS, Peroxisomal biogenesis disorder-Zellweger spectrum disorder
and the related single enzyme deficiencies are progressive, genetic
disorders impacting the peroxisomes, and causing damage to the kidneys,
liver, endocrine, hepatic, gastrointestinal and neurological organ
systems; and

WHEREAS, Peroxisomal biogenesis disorder-Zellweger spectrum disorder
and the related single enzyme deficiencies have a devastating impact on
the health and finances of people of all ages, and equally affects
people of all races, genders, nationalities, geographic locations, and
income levels; and

WHEREAS, The people diagnosed with peroxisomal biogenesis
disorder-Zellweger spectrum disorder and the related single enzyme
deficiencies inherit the disease in an autosomal recessive inheritance
pattern; and

WHEREAS, There are very few treatments and still no cure for
peroxisomal biogenesis disorder-Zellweger spectrum disorder and the
related single enzyme deficiencies, which impacts an estimated 1 in
50,000 live births annually in the United States; and

WHEREAS, Zellweger spectrum disorders can be diagnosed by showing
peroxisome abnormalities that can be monitored in body fluids. The
primary step in Zellweger spectrum disorders diagnosis involves the
detection of elevated very long chain fatty acids; and

WHEREAS, Methods have been developed to detect elevated levels of
very long chain fatty acids in newborn screening for X-linked
adrenoleukodystrophy, a related peroxisomal disorder; and

WHEREAS, Legislation for X-linked adrenoleukodystrophy newborn
screening has passed in many states and screening has begun in New York
State; and

WHEREAS, The Department of Health and Human Services Advisory
Committee for Heritable Disorders for Newborns and Children voted to
propose the addition of X-linked adrenoleukodystrophy screening in the
Recommend Uniform Screening Panel; and

WHEREAS, Newborn screening for X-linked adrenoleukodystrophy should
increase early diagnosis of Zellweger spectrum disorders and
determination of accurate incidence estimates of the disease; and

WHEREAS, All patients with peroxisomal biogenesis disorder-Zellweger
spectrum disorder and the related single enzyme deficiencies suffer from
a variety of health issues, causing a severe strain on resources and on
the delivery of healthcare in the United States; and

WHEREAS, Peroxisomal biogenesis disorder-Zellweger spectrum disorder
and the related single enzyme deficiencies instill in patients and their
caregivers a fear of an unknown future with a life-threatening genetic
disease and apprehension over possible discrimination, including the
risk of losing their health and life insurance, their jobs, and their
chances for promotion; and

WHEREAS, Countless friends, loved ones, spouses, and caregivers of
patients with peroxisomal biogenesis disorder-Zellweger spectrum
disorder and the related single enzyme deficiencies must shoulder the
physical, emotional, and financial burdens that peroxisomal biogenesis
disorder-Zellweger spectrum disorder and the related single enzyme
deficiencies cause; and

WHEREAS, The severity of the symptoms of peroxisomal biogenesis
disorder-Zellweger spectrum disorder and the related single enzyme
deficiencies and the limited public awareness of these diseases cause
many patients and their caregivers to live in denial and forego regular
visits to their physicians or avoid following good health management,
which would help avoid more severe complications with peroxisomal
biogenesis disorder-Zellweger spectrum disorder and the related single
enzyme deficiencies; and

WHEREAS, People who have chronic, life-threatening diseases like
peroxisomal biogenesis disorder-Zellweger spectrum disorder and the
related single enzyme deficiencies and their caregivers have a

predisposition to depression because of their anxiety over pain,
suffering, and premature death; and

WHEREAS, The Global Foundation for Peroxisomal Disorders is
dedicated to: Conducting research to find treatments and a cure for
peroxisomal biogenesis disorder-Zellweger spectrum disorder and the
related single enzyme deficiencies; Fostering public awareness and
understanding of peroxisomal biogenesis disorder-Zellweger spectrum;
Educating patients and their families about the disease to improve their
treatment and care; and Providing support, including by sponsoring
National Peroxisomal Disorder Awareness Day also known annually as
"Pause for PBD" to raise funds for research, education, advocacy, and
awareness for peroxisomal biogenesis disorder-Zellweger spectrum
disorder and the related single enzyme deficiencies; and

WHEREAS, The Global Foundation for Peroxisomal Disorders is
partnering on October 5, 2020, with sister organizations in Canada, The
United Kingdom, and other countries to increase international awareness
of peroxisomal biogenesis disorder-Zellweger spectrum disorder and the
related single enzyme deficiencies; now, therefore, be it

RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Andrew M. Cuomo to proclaim October 5, 2020, as
Peroxisomal Disorder Awareness Day in the State of New York, in
conjunction with the observance of National Peroxisomal Disorder
Awareness Day; and be it further

RESOLVED, That copies of this Resolution, suitably engrossed, be
transmitted to The Honorable Andrew M. Cuomo, Governor of the State of
New York; the New York State Rare Disease Alliance; NORD; and the Global
Foundation for Peroxisomal Disorders.