Pitt Hopkins Syndrome Awareness Day

Proclamation
By the Governor of Alabama

WHEREAS, Pitt Hopkins Syndrome is a rare and severe neurological disorder caused by a spontaneous mutation on the 18th chromosome; and

WHEREAS, Pitt Hopkins Syndrome is characterized by developmental delays, moderate to severe intellectual disability, breathing problems, epilepsy or recurrent seizures, gastrointestinal issues and distinctive facial features; and

WHEREAS, Most affected individuals do not learn to walk unassisted and do not develop speech, but not all symptoms need to be present to warrant genetic testing in individuals; and

WHEREAS, Pitt Hopkins syndrome was first described by two physicians in 1978.Until recently, the diagnosis was based on a person’s medical history and a physical examination; and

WHEREAS, New technology has allowed scientists to identify the genetic cause and now the diagnosis is usually based on the results of microarray analysis which can be performed on a blood sample; and

WHEREAS, Approximately 500 people worldwide have been diagnosed with Pitt Hopkins Syndrome. Given the fact that the discovery of the gene happened just eight years ago, there are likely many others out there that remain undiagnosed; and

WHEREAS, Pitt Hopkins occurs in both males and females and is not limited to a specific ethnic background; and

WHEREAS, Given its rarity, online support groups play a pivotal role for individuals, families and their loved ones to connect and increase awareness:

NOW, THEREFORE, I, Robert Bentley, Governor of Alabama, do hereby proclaim September 18, 2015, as

Pitt Hopkins Syndrome Awareness Day

in the State of Alabama.

Given Under My Hand and the Great Seal of the Office of the Governor at the State Capitol in the City of Montgomery on the 24th day of August 2015.
Robert Bentley, Governor