Kevin Alexander just wanted to meet people like himself. People who never tasted a steak, never fried an egg. People who knew that the letters P, K and U added up to a genetic disorder, a regimented diet — and a way of life. So he decided to make a video, which...
At the 2018 National PKU Alliance conference in Atlanta July 5-9, I’m meeting many people from the world over all striving to improve the lives of those affected by phenylketonuria — the disorder they know so well but is barely recognized outside the PKU...
The University of Washington selected Dr. Michael H. Gelb to give the annual University Faculty Lecture Jan. 23, 2018. He’ll discuss his research passion toward helping infants born with lysosomal storage diseases. As part of the presentation, Dr. Gelb is also...
Newborn Screening in the News An excellent special report by the Chicago Tribune was recently published online. It details how five babies in Illinois born with Krabbe disease suffered from being undiagnosed and untreated despite the state mandating in 2007 that the...
Heartbreak of Krabbe disease: A mother’s story “My son’s life had some kind of meaning. But when I looked up, I just saw this black hole. Anne Rugari She buried her year-old son that day, sat on her front porch that night and stared at the sky....
Another $500,000 is headed to the National PKU Alliance Fund, established to support research for new treatments and, ultimately, a cure for the genetic disorder. With four Lifting the Limits fundraising events in various cities over the past year — the latest...
