PRINTER'S NO. 4188
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No.
1147
Session of
2018
INTRODUCED BY SCHLOSSBERG, BIZZARRO, BURNS, DiGIROLAMO,
HENNESSEY, HILL-EVANS, LONGIETTI, MILLARD, NEILSON,
PASHINSKI, READSHAW, ROZZI, RYAN, SCHWEYER, THOMAS,
YOUNGBLOOD AND PHILLIPS-HILL, OCTOBER 9, 2018
INTRODUCED AS NONCONTROVERSIAL RESOLUTION UNDER RULE 35,
OCTOBER 9, 2018
A RESOLUTION
Designating the month of November 2018 as "Adrenoleukodystrophy
Awareness Month" in Pennsylvania.
WHEREAS, Adrenoleukodystrophy (ALD) is a deadly genetic
condition that damages the membrane insulating the nerve cells
in the human brain; and
WHEREAS, Affecting 1 in 18,000 individuals, ALD causes very
long chain fatty acids (VLCFAs) to build up in the brain,
nervous system and adrenal gland as a result of the body's
inability to break down the VLCFAs; and
WHEREAS, Though it knows no racial, ethnic, nor geographic
boundaries, the most common type of ALD affects the X chromosome
and is carried unknowingly by women; and
WHEREAS, While females can display symptoms of the disorder,
ALD severely affects boys and men; and
WHEREAS, The most devastating form of ALD appears in
childhood, generally between 4 and 10 years of age; and
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WHEREAS, ALD gradually ravages the brain and leads to
blindness, deafness, seizures, loss of muscle control and
progressive dementia, resulting in death or permanent
disability, usually within two to five years from the point of
diagnosis; and
WHEREAS, The best hope for those with ALD is early detection
through newborn screening to allow for treatment; and
WHEREAS, Bone marrow transplants have been shown to be an
effective treatment for ALD when diagnosis is made early; and
WHEREAS, ALD affects men two to three times more often than
women; and
WHEREAS, "Adrenoleukodystrophy Awareness Month" will increase
the public's awareness of ALD patients' circumstances,
acknowledge the terrible impact this disease has on patients and
their families and recognize the need for research and treatment
to eradicate ALD; therefore be it
RESOLVED, That the House of Representatives designate the
month of November 2018 as "Adrenoleukodystrophy Awareness Month"
in Pennsylvania.
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