PRINTER'S NO. 2644
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No.
548
Session of
2019
INTRODUCED BY HEFFLEY, HENNESSEY, KORTZ, KINSEY, LONGIETTI,
RYAN, FREEMAN, DiGIROLAMO, PYLE, YOUNGBLOOD, READSHAW,
SCHLEGEL CULVER, BOBACK, HILL-EVANS, BROWN, SCHMITT,
CALTAGIRONE AND MURT, OCTOBER 11, 2019
REFERRED TO COMMITTEE ON HEALTH, OCTOBER 11, 2019
A RESOLUTION
Designating October 5, 2019, as "Peroxisomal Disorder Awareness
Day" in Pennsylvania.
WHEREAS, Peroxisomal biogenesis disorder - Zellweger syndrome
spectrum (PBD, ZSS) and related single enzyme deficiencies are
progressive, genetic disorders impacting the peroxisomes found
in eukaryotic cells 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, ZSS 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, ZSS 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, ZSS and related single enzyme deficiencies, which impact an
estimated 1 in 50,000 live births annually; and
WHEREAS, All patients seeking care for PBD, ZSS 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, ZSS 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, ZSS 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, ZSS 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,
ZSS and related single enzyme deficiencies; therefore be it
RESOLVED, That the House of Representatives designate October
5, 2019, as "Peroxisomal Disorder Awareness Day" in
Pennsylvania.
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