BILL ANALYSIS �
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THIRD READING
Bill No: SCR 126
Author: Fuller (R)
Amended: As introduced
Vote: 21
SUBJECT : Adrenoleukodystrophy Awareness Month
SOURCE : Author
DIGEST : This resolution memorializes the month of November
2014 as Adrenoleukodystrophy Awareness Month.
ANALYSIS : This resolution makes the following legislative
findings:
1.X-linked adrenoleukodystrophy (X-ALD) is one of a group of
genetic disorders called the leukodystrophies that cause
damage to the myelin sheath, an insulating membrane that
surrounds nerve cells in the brain.
2.Women have two X chromosomes and are the carriers of the
disease, but men are most severely affected because men only
have one X chromosome and lack the protection provided by an
extra X chromosome.
3.X-ALD affects an estimated one in every 20,000 boys, which is
roughly 13,600 people in the United States, including boys
like Jeremy Hill Jr. of Bakersfield.
4.The most common symptoms are behavioral changes, including
abnormal withdrawal or aggression, poor memory, and poor
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school performance. Other symptoms include visual loss,
learning disabilities, seizures, poorly articulated speech,
difficulty swallowing, deafness, disturbances of gait and
coordination, fatigue, intermittent vomiting, increased skin
pigmentation, and progressive dementia.
5.Newborn screening is effective in catching and preventing the
negative effects of X-ALD and is relatively inexpensive.
6.The prognosis for patients with childhood cerebral X-ALD is
generally poor due to progressive neurological deterioration,
unless bone marrow transplantation is performed early.
7.Recent evidence suggests that a mixture of oleic acid and
erucic acid, known as "Lorenzo's Oil," administered to boys
with X-ALD prior to the onset of symptoms can prevent or
delay, but not stop, the appearance of the childhood cerebral
form of X-ALD.
8.Death usually occurs between one and 10 years after the onset
of symptoms of childhood cerebral X-ALD.
9.November, the month of Jeremy Hill Jr.'s birthday, was chosen
to acknowledge the struggles of Jeremy Hill Jr., his parents,
Jeremy and Debra Hill, and his sister, Meagan Hill, in
fighting X-ALD.
This resolution proclaims the month of November 2014 as
Adrenoleukodystrophy Awareness Month.
FISCAL EFFECT : Fiscal Com.: No
JL:nl 6/11/14 Senate Floor Analyses
SUPPORT/OPPOSITION: NONE RECEIVED
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