September 18, 2019: Pitt Hopkins Syndrome Awareness Day

 

WHEREAS, Pitt Hopkins syndrome is a rare and severe neurological disorder caused by a new mutation or deletion involving the TCF4 gene on chromosome 18; and,

 

WHEREAS, Pitt Hopkins syndrome is characterized by developmental delay, moderate to severe intellectual disability, breathing problems, seizures, autism symptoms, and distinctive facial features; and,

 

WHEREAS, approximately 1000 people worldwide have been diagnosed with Pitt Hopkins syndrome, however, given that the gene responsible for the condition was not identified until 2007, there are likely many cases that remain undiagnosed; and,

 

WHEREAS, given its rarity, online support groups play a pivotal role for individuals, families, and their loved ones to connect with each other 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; this date was chosen to bring attention to the disorder’s cause, which is an altered or missing gene on chromosome 18; 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 and to bring practical treatment into current medical practice;

 

NOW, THEREFORE, I, Gretchen Whitmer, governor of Michigan, do hereby proclaim September 18, 2019, as Pitt Hopkins Syndrome Awareness Day in Michigan in recognition and support of individuals with Pitt Hopkins syndrome and their families and to raise awareness of this rare disorder.