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| 1 | HOUSE RESOLUTION
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| 2 | WHEREAS, An estimated 10,000 people worldwide have | ||||||
| 3 | schizencephaly, both diagnosed and undiagnosed, a condition | ||||||
| 4 | for which there is no known cause or cure; and
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| 5 | WHEREAS, Schizencephaly can be a chronic condition that may | ||||||
| 6 | cause epilepsy, muscle spasms,
partial or complete paralysis, | ||||||
| 7 | low vision, and severe medical complications; and
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| 8 | WHEREAS, Patients with this condition often have to learn | ||||||
| 9 | to live with continued therapies and
medical expenses; and
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| 10 | WHEREAS, It may take years to receive a diagnosis of | ||||||
| 11 | schizencephaly, and medical professionals
frequently are | ||||||
| 12 | inadequately educated on the diagnosis and treatment of | ||||||
| 13 | schizencephaly; and | ||||||
| 14 | WHEREAS, Increased awareness and expanded knowledge of the | ||||||
| 15 | realities of life with
schizencephaly will allow the community | ||||||
| 16 | at large to better support people who struggle with the
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| 17 | challenges of this condition; and | ||||||
| 18 | WHEREAS, We Are R.A.R.E. is a nonprofit charitable | ||||||
| 19 | organization and initiative made up of parents
with children | ||||||
| 20 | facing these challenges and aimed at providing research. | ||||||
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| 1 | awareness, and education for
rare neurological disorders; and | ||||||
| 2 | WHEREAS, We Are R.A.R.E. and other groups around our | ||||||
| 3 | country have joined together to promote
schizencephaly | ||||||
| 4 | awareness and support, including improved education, | ||||||
| 5 | diagnosis, research, and
treatment; and
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| 6 | WHEREAS, We Are R.A.R.E. is urging schizencephaly patients | ||||||
| 7 | and their supporters, healthcare
providers, and the general | ||||||
| 8 | public to demonstrate their caring by sharing the road patients | ||||||
| 9 | walk, the
facts about schizencephaly, and the ever-growing | ||||||
| 10 | awareness about the etiology of this disorder and
potential | ||||||
| 11 | treatments; and
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| 12 | WHEREAS, Focusing on schizencephaly and its impact on | ||||||
| 13 | patients' lives will help
guarantee hope for a better future | ||||||
| 14 | for people with schizencephaly; therefore, be it
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| 15 | RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE | ||||||
| 16 | HUNDREDTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we | ||||||
| 17 | congratulate Illinoisans participating in Schizencephaly | ||||||
| 18 | Awareness Day on May 19, 2018, and we urge citizens to support | ||||||
| 19 | the search for a cure and assist those individuals and families | ||||||
| 20 | who deal with this condition on a daily basis; and be it | ||||||
| 21 | further
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| 1 | RESOLVED, That a suitable copy of this resolution be | ||||||
| 2 | presented to We Are R.A.R.E. as a symbol of our respect and | ||||||
| 3 | esteem.
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