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PRINTER'S NO. 4423
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No.
1013
Session of
2020
INTRODUCED BY CRUZ, YOUNGBLOOD, SCHLOSSBERG, BOBACK, HOWARD,
GALLOWAY, DRISCOLL, BURNS, McNEILL, BROWN, SAYLOR, MILLARD,
LONGIETTI, HEFFLEY, MADDEN, MALAGARI, READSHAW, KINSEY,
SCHLEGEL CULVER AND FARRY, SEPTEMBER 25, 2020
INTRODUCED AS NONCONTROVERSIAL RESOLUTION UNDER RULE 35,
SEPTEMBER 25, 2020
A RESOLUTION
Designating the month of September 2020 as "Krabbe Disease
Awareness Month" in Pennsylvania.
WHEREAS, Globoid cell leukodystrophy, commonly known as
Krabbe disease, is an inherited degenerative disorder of the
central and peripheral nervous systems; and
WHEREAS, Krabbe disease is one of a group of genetic
disorders called leukodystrophies; and
WHEREAS, The disease most often affects infants, with onset
before six months of age, but can occur in adolescence or
adulthood; and
WHEREAS, Symptoms include irritability, unexplained fever,
limb stiffness, seizures, feeding difficulties, vomiting,
slowing of mental and motor development, muscle weakness,
spasticity, deafness and blindness; and
WHEREAS, Infantile Krabbe disease affects 1 in 100,000
infants in the United States; and
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WHEREAS, There is no cure for Krabbe disease, but treatment
has been successful when it has begun before the appearance of
overt symptoms and when the disease has been diagnosed early;
and
WHEREAS, Act 148 of 2014 requires hospitals in this
Commonwealth to screen newborns for Krabbe disease and five
other lysosomal storage disorders; and
WHEREAS, Early detection through newborn screening is crucial
for affected children to receive potentially lifesaving
treatment which is effective if administered before a child is
symptomatic; and
WHEREAS, It is imperative that parents understand the
importance of Krabbe disease screening and early detection;
therefore be it
RESOLVED, That the House of Representatives designate the
month of September 2020 as "Krabbe Disease Awareness Month" in
Pennsylvania; and be it further
RESOLVED, That the Commonwealth officially recognize the
importance of screening for this disease and encourage parents
and future parents to educate themselves on this disease and
take the necessary steps to ensure the health of their children.
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