Full Text of HR0987 100th General Assembly
HR0987 100TH GENERAL ASSEMBLY |
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| 1 | | HOUSE RESOLUTION
| 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
| 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
| 8 | | WHEREAS, Patients with this condition often have to learn | 9 | | to live with continued therapies and
medical expenses; and
| 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
| 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
| 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
| 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
| 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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