Bill > HR0987

This Resolution congratulates Illinois residents who participated in "Schizencephaly Awareness Day" on May 19, 2018, and encourages citizens to support the ongoing search for a cure for schizencephaly, a rare neurological disorder affecting an estimated 10,000 people worldwide with no known cause or cure. The resolution highlights that schizencephaly can lead to serious medical issues like epilepsy and paralysis, often requiring lifelong therapies and significant medical expenses, and notes that diagnosis can be delayed due to insufficient education among medical professionals. It emphasizes the importance of increased awareness and knowledge to better support individuals and families affected by this condition, recognizing the efforts of organizations like "We Are R.A.R.E." (Research, Awareness, and Education), a nonprofit dedicated to rare neurological disorders, in promoting research, education, and improved diagnosis and treatment for schizencephaly. Finally, the resolution directs that a copy be presented to "We Are R.A.R.E." as a gesture of respect and esteem.