Bill Text: IL SR0583 | 2015-2016 | 99th General Assembly | Introduced
Bill Title: Designates June 17, 2015 as X-Linked Myotubular Myopathy Awareness Day in the State of Illinois.
Spectrum: Partisan Bill (Democrat 1-0)
Status: (Passed) 2015-05-30 - Resolution Adopted [SR0583 Detail]
Download: Illinois-2015-SR0583-Introduced.html
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1 | SENATE RESOLUTION
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2 | WHEREAS, X-Linked Myotubular Myopathy is a genetic | ||||||
3 | neuromuscular disorder characterized by muscle weakness; most | ||||||
4 | affected individuals have a severe form of the disease that can | ||||||
5 | cause diminished muscle tone, feeding difficulties, and severe | ||||||
6 | breathing complications; and
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7 | WHEREAS, X-Linked Myotubular Myopathy symptoms are often | ||||||
8 | present at birth and almost exclusively in males; it is | ||||||
9 | estimated that 1 out of every 50,000 male babies born will have | ||||||
10 | X-Linked Myotubular Myopathy; and
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11 | WHEREAS, Respiratory distress may cause affected infants | ||||||
12 | to require constant and prolonged mechanical ventilation, | ||||||
13 | which carries many risks such as recurrent infection, | ||||||
14 | inadequate shallow breathing, and lack of oxygen in the blood; | ||||||
15 | individuals with X-Linked Myotubular Myopathy usually survive | ||||||
16 | only into early childhood; and
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17 | WHEREAS, Poor muscle development can cause delays in motor | ||||||
18 | skill milestones; most individuals are unable to walk and | ||||||
19 | require assistance for normal daily activities; for affected | ||||||
20 | individuals who live into adulthood, additional symptoms | ||||||
21 | include bone fractures, malformation of the hip, and scoliosis; | ||||||
22 | and
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1 | WHEREAS, X-Linked Myotubular Myopathy is caused by | ||||||
2 | mutations in the MTM1 gene; molecular genetic testing can | ||||||
3 | detect a mutation in 60 to 98 percent of affected individuals; | ||||||
4 | and
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5 | WHEREAS, Treatment of X-Linked Myotubular Myopathy is | ||||||
6 | focused on the specific symptoms experienced by each affected | ||||||
7 | individual and usually requires intensive medical | ||||||
8 | intervention; there are ongoing studies to identify more | ||||||
9 | effective treatment therapies; therefore, be it
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10 | RESOLVED, BY THE SENATE OF THE NINETY-NINTH GENERAL | ||||||
11 | ASSEMBLY OF THE STATE OF ILLINOIS, that we designate June 17, | ||||||
12 | 2015 as X-Linked Myotubular Myopathy Awareness Day in the State | ||||||
13 | of Illinois in order to bring attention to those affected by | ||||||
14 | this disorder and the efforts of many to identify better | ||||||
15 | treatment for those individuals.
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