Have you ever heard of Prader Willi Syndrome? No? That was our same answer until our daughter, Audrey Rose, was born on December 12, 2021. After 18 days in the NICU we finally had our answer for why our daughter was not doing typical newborn things like moving her limbs, opening her eyes, eating, crying, or responding to touch. Auddie Rose was diagnosed with Prader Willi Syndrome (PWS).

Prader Willi Syndrome is a genetic disorder that affects a critical region of chromosome 15. PWS affects 1 in 15,000 births. With the spectrum syndrome there is risk of abnormal growth and body composition, insatiable hunger, and intellectual disability. The symptoms of PWS are likely due to dysfunction of a portion of the brain called the hypothalamus.

To raise awareness about Prader Willi Syndrome we host a trivia night every October. It is well attended, with roughly 200 trivia guests and 20 family volunteers. The proceeds benefit PWSA | USA, a foundation that helped us in our darkest days and who is on the cutting edge of research, medical trials & life changing treatments. PWSA | USA provides support in three specific ways; (1) family & medical support, (2) research, and (3) public policy & advocacy.