WHEREAS, Pitt Hopkins Syndrome is a rare and severe neurological disorder caused by a spontaneous mutation or deletion 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, approximately 700 people worldwide have been diagnosed with Pitt Hopkins Syndrome, however, given the fact that the discovery of the gene occurred in 2007, there are likely many other cases that remain undiagnosed; and,
WHEREAS, given its rarity, online support groups play a pivotal role for individuals, families and their loved ones in order to connect and increase awareness; and,
WHEREAS, the Pitt Hopkins Research Foundation annually celebrates September 18th as International Pitt Hopkins Syndrome Awareness Day to raise awareness and funding for Pitt Hopkins research and this date was chosen to bring attention to the fact that it is a disorder caused by a spontaneous mutation or deletion on the 18th 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 the funding of research, education and advocacy. The Board of Directors is currently comprised of parents and grandparents of children and adults with Pitt Hopkins Syndrome; and,
WHEREAS, the foundation's goal is to bring practical treatment into current medical practice;
NOW, THEREFORE, I, Rick Snyder, governor of Michigan, do hereby proclaim September 18, 2017 as Pitt Hopkins Syndrome Awareness Day.