THE GENERAL ASSEMBLY OF PENNSYLVANIA

HOUSE RESOLUTION

INTRODUCED BY GEIST, STERN, BAKER, BRENNAN, D. COSTA, EVERETT, GEORGE, GODSHALL, GROVE, HARHART, HESS, HICKERNELL, KORTZ, LONGIETTI, MARSICO, MILLARD, MOUL, READSHAW, ROCK, ROSS, SANTONI, SAYLOR, SCAVELLO, SCHMOTZER, SONNEY, STABACK, VEREB, VULAKOVICH, YOUNGBLOOD, O'NEILL, FLECK, KNOWLES AND MAHONEY, JUNE 5, 2012

INTRODUCED AS NONCONTROVERSIAL RESOLUTION UNDER RULE 35, JUNE 5, 2012  

A RESOLUTION

Recognizing the month of August 2012 as "Adrenoleukodystrophy

Awareness Month" in Pennsylvania and encouraging research on

adrenoleukodystrophy to be conducted.

WHEREAS, Adrenoleukodystrophy (ALD) is an X-linked genetic

disorder that affects the adrenal glands and is characterized by

progressive brain and central nervous system deterioration; and

WHEREAS, ALD affects mostly males, but some women who are

carriers can have milder forms of the disease; and

WHEREAS, There are three distinct types of ALD; and

WHEREAS, The first type of ALD, childhood cerebral ALD,

affects boys between four and ten years of age and affects one

in every 17,900 boys worldwide; and

WHEREAS, With childhood cerebral ALD, boys develop normally

until the onset of symptoms occur, which typically rival those

of attention deficit disorder before serious neurological

involvement becomes apparent at which time the symptoms progress

rapidly and lead to a vegetative state within two years and

eventually death; and

WHEREAS, The second type of ALD, adrenomyeloneuropathy (AMN),

affects otherwise healthy adult males between 20 and 40 years of

age; and

WHEREAS, AMN affects the spinal cord and leads to symptoms

similar to multiple sclerosis which worsen over a period of

decades; and

WHEREAS, Thirty-five percent of men affected by AMN develop

cerebral symptoms similar to childhood cerebral ALD which lead

to death in just a few short years; and

WHEREAS, The third type of ALD, Addison's disease, affects

all age groups and can be life threatening; and

WHEREAS, With Addison's disease, adrenal glands produce too

little cortisol as well as insufficient levels of aldosterone;

and

WHEREAS, ALD is more widespread than amyotrophic lateral

sclerosis (ALS), often referred to as "Lou Gehrig's disease";

and

WHEREAS, Treatment with adrenal hormones can be lifesaving;

and

WHEREAS, Symptomatic and supportive treatments for ALD

include physical therapy, psychological support and special

education; and

WHEREAS, Two additional treatments, Lorenzo's oil and bone

marrow transplantation, appear to be most effective in early

stages of the disease but are not effective in later stages of

the disease; and

WHEREAS, Genetic counseling is recommended for prospective

parents with a family history of ALD; and

WHEREAS, Prenatal diagnosis of ALD is also available; and

WHEREAS, Increasing awareness and understanding of ALD and

promoting research on the disease will help children and adults

with ALD be identified as early as possible when there is the

best hope of a beneficial treatment; therefore be it

RESOLVED, That the House of Representatives recognize August

2012 as "Adrenoleukodystrophy Awareness Month" in Pennsylvania

and encourage research on adrenoleukodystrophy to be conducted.