Illinois General Assembly - Full Text of HR0987
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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
3schizencephaly, both diagnosed and undiagnosed, a condition
4for which there is no known cause or cure; and
 
5    WHEREAS, Schizencephaly can be a chronic condition that may
6cause epilepsy, muscle spasms, partial or complete paralysis,
7low vision, and severe medical complications; and
 
8    WHEREAS, Patients with this condition often have to learn
9to live with continued therapies and medical expenses; and
 
10    WHEREAS, It may take years to receive a diagnosis of
11schizencephaly, and medical professionals frequently are
12inadequately educated on the diagnosis and treatment of
13schizencephaly; and
 
14    WHEREAS, Increased awareness and expanded knowledge of the
15realities of life with schizencephaly will allow the community
16at large to better support people who struggle with the
17challenges of this condition; and
 
18    WHEREAS, We Are R.A.R.E. is a nonprofit charitable
19organization and initiative made up of parents with children
20facing these challenges and aimed at providing research.

 

 

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1awareness, and education for rare neurological disorders; and
 
2    WHEREAS, We Are R.A.R.E. and other groups around our
3country have joined together to promote schizencephaly
4awareness and support, including improved education,
5diagnosis, research, and treatment; and
 
6    WHEREAS, We Are R.A.R.E. is urging schizencephaly patients
7and their supporters, healthcare providers, and the general
8public to demonstrate their caring by sharing the road patients
9walk, the facts about schizencephaly, and the ever-growing
10awareness about the etiology of this disorder and potential
11treatments; and
 
12    WHEREAS, Focusing on schizencephaly and its impact on
13patients' lives will help guarantee hope for a better future
14for people with schizencephaly; therefore, be it
 
15    RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE
16HUNDREDTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we
17congratulate Illinoisans participating in Schizencephaly
18Awareness Day on May 19, 2018, and we urge citizens to support
19the search for a cure and assist those individuals and families
20who deal with this condition on a daily basis; and be it
21further
 

 

 

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1    RESOLVED, That a suitable copy of this resolution be
2presented to We Are R.A.R.E. as a symbol of our respect and
3esteem.