HJ0013LRB097 10564 RPM 50912 r

1
HOUSE JOINT RESOLUTION

 
2    WHEREAS, Krabbe disease, also known as Globoid Cell
3Leukodystrophy, is an inherited neurodegenerative lysosomal
4enzyme disorder affecting the central and peripheral nervous
5systems caused by a defect in the GALC gene; persons with this
6gene defect do not make enough of an enzyme called
7galactosylceramidase; the body needs this enzyme to make
8myelin, the material that surrounds and protects nerve fibers;
9without the enzyme, myelin breaks down and as a result, brain
10cells die and nerves in the brain and other body areas cannot
11function properly; and
 
12    WHEREAS, The symptoms of the infantile form of Krabbe
13disease usually begin before the age of one year; initial signs
14and symptoms typically include irritability, muscle weakness,
15feeding difficulties, episodes of fever without any sign of
16infection, stiff posture, and slowed mental and physical
17development; with disease progression, muscles continue to
18weaken, affecting the infant's ability to move, chew, swallow,
19and breathe; affected infants also experience vision loss and
20seizures; death usually occurs before the age of 2 years; and
 
21    WHEREAS, Though the condition is considered very rare (1 in
22100,000 births in the United States) it is estimated that the
23carrier rate in the general population is estimated to be 1 in

 

 

HJ0013- 2 -LRB097 10564 RPM 50912 r

1125 births; the genesis for this resolution is the late Liam
2Hammonds who succumbed from Krabbe disease in 2001 before his
3first birthday; his parents, Scott and Terry established a
4memorial foundation in his behalf to educate the public about
5Krabbe disease and provide monetary and other support to
6affected families; therefore, be it
 
7    RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE
8NINETY-SEVENTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, THE
9SENATE CONCURRING HEREIN, that the Department of Public Health
10shall study Krabbe disease and related leukodystrophies and
11report to the General Assembly by December 31, 2012 salient
12information, including, but not limited to, disease incidence
13in this State, available treatment options, State or federal
14research projects, available disease registries and biobanks,
15diagnostic tests and their usage, access and availability of
16drugs, economic impact of the disease on families, and any
17other relevant information that the General Assembly should
18consider in addressing the diseases; and be it further
 
19    RESOLVED, That a suitable copy of this resolution be
20delivered to the Director of Public Health.