Fifty-five years ago, newborn screening was born. At the time, though, that little heel prick was performed to screen for only one condition: phenylketonuria (PKU). Without early intervention, babies born with PKU faced severe cognitive, behavioral and other neurological disorders. The advent of PKU newborn screening allowed health care providers and families to make critical changes to a baby’s diet to prevent those consequences.
Today, December 3, is PKU Awareness Day. It’s hard to say where newborn screening would be without that first PKU test. And 55 years later, it’s hard to say where newborn screening would be without the families and individuals living with PKU who have shared their stories to convey the value of this simple test. One of those individuals is Kevin Alexander.
Kevin has been a leader in the PKU community simply by sharing his story and his experiences living with PKU. He has spoken at conferences and events around the world, created a video documentary about his life, served as a leader and friend to others living with PKU, and now he shares his voice in a new podcast.
For this PKU Awareness Day, we are sharing Kevin’s podcast, PKU Life Podcast with Kevin Alexander. We are so appreciative of Kevin’s willingness to both share with and listen to those in the newborn screening community. Kevin, thank you for your leadership, friendship and generosity!
Four years ago, as APHL joined with partners to celebrate the 50th anniversary of routine newborn screening in the United States, newborn screening hit more closely for APHL staff than it ever had before. Michelle Forman, manager of media and Lab Culture host, received a text that her new niece, Sloane, had a positive newborn screen. Her results were out of range for PKU. In this episode, Michelle interviews Sloane's mom, Judith Forman, about that experience.