HJ0013 97TH GENERAL ASSEMBLY

HJ0013 LRB097 10564 RPM 50912 r

HOUSE JOINT RESOLUTION

WHEREAS, Krabbe disease, also known as Globoid Cell Leukodystrophy, is an inherited neurodegenerative lysosomal enzyme disorder affecting the central and peripheral nervous systems caused by a defect in the GALC gene; persons with this gene defect do not make enough of an enzyme called galactosylceramidase; the body needs this enzyme to make myelin, the material that surrounds and protects nerve fibers; without the enzyme, myelin breaks down and as a result, brain cells die and nerves in the brain and other body areas cannot function properly; and

WHEREAS, The symptoms of the infantile form of Krabbe disease usually begin before the age of one year; initial signs and symptoms typically include irritability, muscle weakness, feeding difficulties, episodes of fever without any sign of infection, stiff posture, and slowed mental and physical development; with disease progression, muscles continue to weaken, affecting the infant's ability to move, chew, swallow, and breathe; affected infants also experience vision loss and seizures; death usually occurs before the age of 2 years; and

WHEREAS, Though the condition is considered very rare (1 in 100,000 births in the United States) it is estimated that the carrier rate in the general population is estimated to be 1 in 125 births; the genesis for this resolution is the late Liam Hammonds who succumbed from Krabbe disease in 2001 before his first birthday; his parents, Scott and Terry established a memorial foundation in his behalf to educate the public about Krabbe disease and provide monetary and other support to affected families; therefore, be it

RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE NINETY-SEVENTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, THE SENATE CONCURRING HEREIN, that the Department of Public Health shall study Krabbe disease and related leukodystrophies and report to the General Assembly by December 31, 2012 salient information, including, but not limited to, disease incidence in this State, available treatment options, State or federal research projects, available disease registries and biobanks, diagnostic tests and their usage, access and availability of drugs, economic impact of the disease on families, and any other relevant information that the General Assembly should consider in addressing the diseases; and be it further

RESOLVED, That a suitable copy of this resolution be delivered to the Director of Public Health.