Peroxisomal Disorder Awareness Day

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.