"Our son Andrew, is the inspiration behind 12-04 along with all the other incredible families affected by Pallister Killian Syndrome (PKS). Andrew Schmidt, 16, of Becker, MN was diagnosed with PKS when he was just shy of 5 years old after first being diagnosed with Beckwith-Wiedeman Syndrome; he finally had a diagnosis that fit him. Since that time, Andrew has experienced the highs and lows of living with a rare genetic disorder."

In this episode of Open Book, we hear Nicole Schmidt tell the story of her family, the founding of Project 12-04, and their mission to celebrate children and families affected by Rare Genetic Conditions.