PRINTER'S NO. 4418
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No.
1008
Session of
2020
INTRODUCED BY HEFFLEY, BURNS, HENNESSEY, RYAN, MURT, LONGIETTI,
KINSEY, MILLARD, READSHAW AND SONNEY, SEPTEMBER 25, 2020
INTRODUCED AS NONCONTROVERSIAL RESOLUTION UNDER RULE 35,
SEPTEMBER 25, 2020
A RESOLUTION
Designating October 5, 2020, as "Peroxisomal Disorder Awareness
Day" in Pennsylvania.
WHEREAS, Peroxisomal biogenesis disorder - Zellweger spectrum
disorder (PBD-ZSD) and related single enzyme deficiencies are
progressive, genetic disorders impacting peroxisomes found in
every cell of the body that are necessary for cell function,
brain development and the formation of myelin; and
WHEREAS, Disorders that impact peroxisomes cause damage to
the kidneys and liver, and the endocrine, hepatic
gastrointestinal and neurological organ systems; and
WHEREAS, PBD-ZSD and related single enzyme deficiencies have
a devastating impact on the health and finances of individuals
of all ages, and equally affect individuals of all races,
genders, nationalities, geographic locations and income levels;
and
WHEREAS, Individuals diagnosed with PBD-ZSD and related
single enzyme deficiencies inherit the disease in an autosomal
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recessive inheritance pattern; and
WHEREAS, There are very few treatments and still no cure for
PBD-ZSD and related single enzyme deficiencies, which impact an
estimated 1 in 50,000 live births annually; and
WHEREAS, All patients seeking care for PBD-ZSD and related
single enzyme deficiencies suffer from a variety of health
issues, causing a severe strain on resources and on the delivery
of health care in the United States; and
WHEREAS, Individuals diagnosed with PBD-ZSD and related
single enzyme deficiencies are instilled with 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 of
promotion; and
WHEREAS, Friends, loved ones, spouses and caregivers of
patients seeking care for PBD-ZSD and related single enzyme
deficiencies must shoulder the physical, emotional and financial
burdens of the disease; and
WHEREAS, Individuals who have chronic, life-threatening
diseases like PBD-ZSD and related single enzyme deficiencies and
their caregivers have a predisposition to depression because of
their anxiety over pain, suffering and premature death; and
WHEREAS, Peroxisomal disorder awareness and education are
important to raise public awareness and understanding of PBD-ZSD
and related single enzyme deficiencies; therefore be it
RESOLVED, That the House of Representatives designate October
5, 2020, as "Peroxisomal Disorder Awareness Day" in
Pennsylvania.
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