Bill Text: CA SCR8 | 2015-2016 | Regular Session | Introduced

NOTE: There are more recent revisions of this legislation. Read Latest Draft

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Bill Title: Adrenoleukodystrophy Awareness Month.

Spectrum: Partisan Bill (Republican 1-0)

Status: (Passed) 2015-08-26 - Chaptered by Secretary of State. Res. Chapter 140, Statutes of 2015. [SCR8 Detail]

Download: California-2015-SCR8-Introduced.html

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BILL NUMBER: SCR 8	INTRODUCED
	BILL TEXT


INTRODUCED BY   Senator Fuller

                        JANUARY 13, 2015

   Relative to X-linked adrenoleukodystrophy.


	LEGISLATIVE COUNSEL'S DIGEST


   SCR 8, as introduced, Fuller. Adrenoleukodystrophy Awareness
Month.
   This measure would memorialize the month of November 2015 as
Adrenoleukodystrophy Awareness Month.
   Fiscal committee: no.



   WHEREAS, 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; and
   WHEREAS, 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; and
   WHEREAS, The loss of myelin and the progressive dysfunction of the
adrenal gland are the primary characteristics of X-ALD; and
   WHEREAS, 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; and
   WHEREAS, While nearly all patients with X-ALD suffer from adrenal
insufficiency, also known as Addison's disease, the neurological
symptoms can begin either in childhood or adulthood; and
   WHEREAS, The childhood cerebral form is the most severe, with
onset between ages four and 10; and
   WHEREAS, The most common symptoms are behavioral changes,
including abnormal withdrawal or aggression, poor memory, and poor
school performance; and
   WHEREAS, 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; and
   WHEREAS, The milder adult-onset form is known as
adrenomyeloneuropathy (AMN), which typically begins between 21 and 35
years of age, and has symptoms that include progressive stiffness,
weakness or paralysis of the lower limbs, and ataxia; and
   WHEREAS, Almost one-half the women who are carriers of X-ALD will
develop a milder form of AMN, but almost never will develop symptoms
seen in boys with X-ALD; and
   WHEREAS, Treatment with adrenal hormones can be lifesaving, and
symptomatic and supportive treatments for X-ALD include physical
therapy, psychological support, and special education; and
   WHEREAS, Newborn screening is effective in catching and preventing
the negative effects of X-ALD and is relatively inexpensive; and
   WHEREAS, The prognosis for patients with childhood cerebral X-ALD
is generally poor due to progressive neurological deterioration,
unless bone marrow transplantation is performed early; and
   WHEREAS, 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; and
   WHEREAS, 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; and
   WHEREAS, 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; now, therefore, be it
   Resolved by the Senate of the State of California, the Assembly
thereof concurring, That the Legislature does hereby proclaim the
month of November 2015 as Adrenoleukodystrophy Awareness Month; and
be it further
   Resolved, That the Secretary of the Senate transmit copies of this
resolution to the author for appropriate distribution.