Pitt Hopkins Syndrome Awareness Day
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City of El Mirage PROCLAMATION Pitt Hopkins Syndrome Awareness Day WHEREAS Pitt Hopkins Syndrome is a rare and severe neurological genetic disorder caused by a spontaneous mutation or deletion of the TCF4 gene; and, WHEREAS, Pitt Hopkins affects brain and nervous system development and is characterized by intellectual disability and developmental delay, breathing problems, epilepsy or recurrent seizures, gastrointestinal issues, lack of speech, and distinctive facial features; and, WHEREAS children with Pitt Hopkins Syndrome typically have a happy, excitable demeanor with frequent smiling and laughter; and, WHEREAS, fewer than 1,500 people worldwide have been diagnosed with Pitt Hopkins Syndrome; and, WHEREAS even though the cause of Pitt Hopkins is known, there are currently no pharmaceutical treatments available for this disorder; and, WHEREAS the Pitt Hopkins Research Foundation annually celebrates September l8th as International Pitt Hopkins Syndrome Awareness Day to raise awareness and funding for research; this date was chosen to bring attention to the disorder’s cause, which is a spontaneous mutation or deletion on the l8th chromosome; and, WHEREAS the Pitt Hopkins Research Foundation is a volunteer organization of families and professionals dedicated to finding a cure for Pitt Hopkins Syndrome through research funding, education, and advocacy; the Foundation’s goal is to bring practical treatment into current medical use. NOW, THEREFORE, I, Alexis Hermosillo, Mayor of El Mirage, Arizona, do hereby affix my hand and seal this 17th day of September 2024 and proclaim September 18, 2024, as PITT HOPKINS SYNDROME AWARENESS DAY in El Mirage, Arizona and encourage all citizens to increase awareness and understanding of Pitt Hopkins Syndrome in order to assist those individuals and families who live with this condition every day of their lives, ______________________________ Alexis A. Hermosillo, Mayor