Full Text of HJR0013 97th General Assembly
HJ0013 97TH GENERAL ASSEMBLY |
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| 1 | | HOUSE JOINT RESOLUTION
| 2 | | WHEREAS, Krabbe disease, also known as Globoid Cell | 3 | | Leukodystrophy, is an inherited neurodegenerative lysosomal | 4 | | enzyme disorder affecting the central and peripheral nervous | 5 | | systems caused by a defect in the GALC gene; persons with this | 6 | | gene defect do not make enough of an enzyme called | 7 | | galactosylceramidase; the body needs this enzyme to make | 8 | | myelin, the material that surrounds and protects nerve fibers; | 9 | | without the enzyme, myelin breaks down and as a result, brain | 10 | | cells die and nerves in the brain and other body areas cannot | 11 | | function properly; and
| 12 | | WHEREAS, The symptoms of the infantile form of Krabbe | 13 | | disease usually begin before the age of one year; initial signs | 14 | | and symptoms typically include irritability, muscle weakness, | 15 | | feeding difficulties, episodes of fever without any sign of | 16 | | infection, stiff posture, and slowed mental and physical | 17 | | development; with disease progression, muscles continue to | 18 | | weaken, affecting the infant's ability to move, chew, swallow, | 19 | | and breathe; affected infants also experience vision loss and | 20 | | seizures; death usually occurs before the age of 2 years; and
| 21 | | WHEREAS, Though the condition is considered very rare (1 in | 22 | | 100,000 births in the United States) it is estimated that the | 23 | | carrier rate in the general population is estimated to be 1 in |
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| 1 | | 125 births; the genesis for this resolution is the late Liam | 2 | | Hammonds who succumbed from Krabbe disease in 2001 before his | 3 | | first birthday; his parents, Scott and Terry established a | 4 | | memorial foundation in his behalf to educate the public about | 5 | | Krabbe disease and provide monetary and other support to | 6 | | affected families; therefore, be it
| 7 | | RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE | 8 | | NINETY-SEVENTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, THE | 9 | | SENATE CONCURRING HEREIN, that the Department of Public Health | 10 | | shall study Krabbe disease and related leukodystrophies and | 11 | | report to the General Assembly by December 31, 2012 salient | 12 | | information, including, but not limited to, disease incidence | 13 | | in this State, available treatment options, State or federal | 14 | | research projects, available disease registries and biobanks, | 15 | | diagnostic tests and their usage, access and availability of | 16 | | drugs, economic impact of the disease on families, and any | 17 | | other relevant information that the General Assembly should | 18 | | consider in addressing the diseases; and be it further
| 19 | | RESOLVED, That a suitable copy of this resolution be | 20 | | delivered to the Director of Public Health.
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