McLean County Times

The city of Bloomington Illinois declared a day a citywide awareness day for a rare genetic condition. Bloomington City Manager Tim Gleason made comments about the importance of the condition to him. 

Pitt Hopkins disease is an uncommon genetic condition that is created by a mutation on the 18th chromosome and results in a neurological disorder that can cause epilepsy, breathing problems, distinctive facial features, developmental delays and intellectual disabilities. It affects 1500 worldwide, though more are suspected due to the recent discovery of the syndrome. 

"Thank you very much, Mayor, for this. This is something that's near and dear to me," Gleason said. 

The city of Bloomington, Illinois honored Sept. 18, 2022, as Pitt Hopkins Syndrome Awareness day in the town. It was declared after the Pitt Hopkins Research Foundation had also commemorated their ninth annual Pitt Hopkins International Awareness day on Sept. 18, 2022. The Foundation is made up of volunteers, family members, and professionals looking for cures for the syndrome. 

City Manager Tim Gleason had personal reasons for thanking the city for recognizing the syndrome and creating a day of awareness for it. He has a personal connection to the declaration because his grandson has been diagnosed with the syndrome and has a fairly severe case of the disorder, and will always require a caregiver.