Illinois Senate Declares May 2025 as Prader-Willi Syndrome Awareness Month

The Illinois Senate unanimously approved Senate Resolution 25, sponsored by Senator Neil Anderson (R-Andalusia), declaring May 2025 as Prader-Willi Syndrome (PWS) Awareness Month.

The resolution was introduced following a member initiative request from Chris and Amy Avart of Mason City, whose young daughter, Esme, lives with PWS — a rare genetic disorder that causes constant hunger, developmental challenges, and requires 24/7 care. The Avarts shared their story earlier this year before the Senate Public Health Committee, urging lawmakers to bring greater attention to the condition.

“Each day, Chris and Amy wake up with an unwavering commitment to caring for Esme,” said Senator Anderson. “Their courage and determination brought this issue to our attention, and through this resolution, we hope to raise more awareness and give the PWS community a stronger voice in their advocacy efforts.”

PWS affects about 1 in 15,000 children and is caused by a defect on the 15th chromosome. The condition leads to significant neurological, metabolic, and behavioral challenges, including a constant, unrelenting sensation of hunger due to impaired communication between the brain and stomach.

By declaring May as Prader-Willi Syndrome Awareness Month, Senator Anderson hopes to promote public understanding of the condition and encourage future efforts to formally recognize PWS as a disability in Illinois.