BILL ANALYSIS Ó
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|SENATE RULES COMMITTEE | SCR 162|
|Office of Senate Floor Analyses | |
|(916) 651-1520 Fax: (916) | |
|327-4478 | |
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THIRD READING
Bill No: SCR 162
Author: Fuller (R)
Introduced:8/3/16
Vote: 21
SUBJECT: Adrenoleukodystrophy Awareness Month
SOURCE: Author
DIGEST: This resolution memorializes the month of November
2016 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.
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, including
boys like Jeremy Hill, Jr. of Bakersfield. The neurological
symptoms can begin either in childhood or adulthood; and the
childhood cerebral form is the most severe, with onset between
four and 10 years of age.
SCR 162
Page 2
4)The milder adult-onset form is known as adrenomyeloneuropathy
(AMN), which typically begins between 21 and 35 years of age.
5)Death usually occurs between one and 10 years after the onset
of symptoms of childhood cerebral X-ALD, and in adult-onset
AMN deterioration will progress over decades.
6)Treatment with adrenal hormones can be lifesaving, and
symptomatic and supportive treatments for X-ALD include
physical therapy, psychological support, and special
education.
7)Newborn screening is effective in catching and preventing the
negative effects of X-ALD and is relatively inexpensive.
8)The prognosis for patients with childhood cerebral X-ALD is
generally poor due to progressive neurological deterioration,
unless bone marrow transplantation is performed early.
9)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.
This resolution proclaims the month of November 2016 as
Adrenoleukodystrophy Awareness Month. 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.
Related/Prior Legislation
SCR 162
Page 3
SCR 8 (Fuller, Resolution Chapter 140, Statutes of 2015)
proclaimed the month of November 2015 as Adrenoleukodystrophy
Awareness Month.
FISCAL EFFECT: Appropriation: No Fiscal
Com.:NoLocal: No
SUPPORT: (Verified8/8/16)
None received
OPPOSITION: (Verified8/8/16)
None received
Prepared by: Melissa Ward / SFA / (916) 651-1520
8/10/16 15:40:21
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