Living with PKU: Patient Approaches to the Management of PKU

Hear the Replay!

It is not easy for people with PKU to stay on their diet regimen. Learn the strategies that help people successfully manage this condition and ask questions of experts and experienced caregivers. Share your story too! Click here for replays of the most recent PKU programs.

Guests:
Debra Hook, Metabolic Dietitian, University of California, Irvine
John Adams, Father of a 21-year-old son whose PKU was diagnosed thanks to the modern miracle of newborn screening
John Adams, Jr., 21-year-old diagnosed with PKU as a newborn
Sarah Foster, 37-year-old Living with PKU

Debra Hook Metabolic Dietitian University of California Irvine Medical Center Debra is a pediatric dietitian that specializes in inborn errors of metabolism. She has been working in this area for over 12 years. Currently she works at University of California, Irvine as a dietitian as well as coordinate their metabolic team center. In her spare time, she teaches part time at California State University, San Bernardino. Many of her students help Debra in her low protein cooking class. More Info

John Adams Father of 21-year-old with PKU, President and CEO Canadian PKU and Allied Disorders John Adams is the father of a 21-year-old son whose PKU was diagnosed thanks to the modern miracle of newborn screening. He serves as the President & CEO of the Canadian PKU and Allied Disorders non-profit organization (CanPKU). CanPKU exists to help provide peer-to- peer family support, information sharing, research support, public education, and advocacy. Mr. Adams also volunteers as Treasurer of the Canadian Organization of Rare Disorders. He is the global director of business development for OZ Systems of Dallas, Texas, which provides information management solutions for newborn screening, early childhood health and education programs. This includes specialized databases, tracking applications and business intelligence tools. OZ Systems help protect the health of children in Australia, Europe and the US. More Info

Sarah Foster 37-year-old Living with PKU Sarah Foster was diagnosed as a child with PKU. She is now 37-years-old living well with PKU. Sarah is a strong advocate in raising awareness in the PKU community and connecting with others for support. She maintains the website PKU World Link, www.pkuworldlink.org. More Info

How to Listen

Online: Approximately 1 hour before the program begins, a link to the live stream will appear on this web page.

Phone: Listen over the phone by dialing (877) 774-2465.

Questions: Email questions in advance or during the program to pku@patientpower.info.

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