Bill Text: IL HJR0013 | 2011-2012 | 97th General Assembly | Introduced
Bill Title: Resolves that the Department of Public Health shall study Krabbe disease and related leukodystrophies.
Spectrum: Slight Partisan Bill (Democrat 2-1)
Status: (Passed) 2011-05-22 - Adopted Both Houses [HJR0013 Detail]
Download: Illinois-2011-HJR0013-Introduced.html
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1 | HOUSE JOINT RESOLUTION
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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
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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
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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
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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
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19 | RESOLVED, That a suitable copy of this resolution be | ||||||
20 | delivered to the Director of Public Health.
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