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| | SR1408 | | LRB100 20694 MST 36152 r |
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| 1 | | SENATE RESOLUTION
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| 2 | | WHEREAS, KCNQ2 Encephalopathy is a form of neonatal |
| 3 | | epileptic encephalopathy, first
recognized in 2011, that |
| 4 | | typically presents with seizures within the first week of life; |
| 5 | | and
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| 6 | | WHEREAS, The number of undiagnosed children with KCNQ2 |
| 7 | | Epileptic Encephalopathy is predicted to be significantly |
| 8 | | higher than the number of those currently diagnosed; and
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| 9 | | WHEREAS, Diagnoses of KCNQ2 Encephalopathy can take months |
| 10 | | or years and are often missed; and
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| 11 | | WHEREAS, Seizures in children with KCNQ2 Encephalopathy |
| 12 | | are often difficult to treat and can
lead to lifelong |
| 13 | | developmental delays; and
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| 14 | | WHEREAS, Children with KCNQ2 Encephalopathy are at a |
| 15 | | greater risk for sudden unexpected
death in epilepsy (SUDEP); |
| 16 | | and
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| 17 | | WHEREAS, Physicians believe early diagnosis and proper |
| 18 | | treatment can lead to better outcomes
for children with KCNQ2 |
| 19 | | Encephalopathy; and
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| | SR1408 | - 2 - | LRB100 20694 MST 36152 r |
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| 1 | | WHEREAS, Researchers and physicians at the Ann & Robert H. |
| 2 | | Lurie Children's Hospital of Chicago
are on the forefront of |
| 3 | | research and treatment of children with KCNQ2 Encephalopathy; |
| 4 | | and
|
| 5 | | WHEREAS, The Jack Pribaz Foundation, located in Wheaton, is |
| 6 | | one of the few 501(c)(3) nonprofit
organizations in the world |
| 7 | | dedicated to KCNQ2 Encephalopathy research and awareness; |
| 8 | | therefore, be it
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| 9 | | RESOLVED, BY THE SENATE OF THE ONE HUNDREDTH GENERAL |
| 10 | | ASSEMBLY OF THE STATE OF ILLINOIS, that we declare March 1-7, |
| 11 | | 2018 as KCNQ2 Encephalopathy Awareness Week in the State of
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| 12 | | Illinois; and be it further
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| 13 | | RESOLVED, That we urge parents, physicians, and other |
| 14 | | health care professionals to observe this
week by educating |
| 15 | | themselves on the symptoms, diagnoses, treatment, and impact of |
| 16 | | KCNQ2
Encephalopathy and to join with the Ann & Hobert H. Lurie |
| 17 | | Children's Hospital of Chicago and the Jack
Pribaz Foundation |
| 18 | | in supporting programs of research and education; and be it |
| 19 | | further
|
| 20 | | RESOLVED, That suitable copies of this resolution be |
| 21 | | presented to the Ann & Robert H. Lurie
Children's Hospital of |
| 22 | | Chicago Division of Pediatric Epilepsy and the Jack Pribaz |