News

Ask The Dietitian: Is the Carb-Heavy PKU Diet Unhealthy?

Question:  I have noticed that things in the phe books list many things with lots of sugars and sodium have the lowest phe in them and that a lot of recipes contain lots of sugary type and sodium type ingredients. How can all that be healthy for your body. I am…


Celebrating 30 Years of Service to the PKU Community

National PKU News celebrates its 30th anniversary this month, April 2019. To mark the occasion, PKU News’ intern, Gisele Miler, who is Dietetic Intern and Masters student in Nutrition at Auburn University, interviewed our founder, Virginia Schuett, about the history and evolution of the organization. What follows is an edited…


NBS Survey from Expecting Health & The Genetic Alliance

Expecting Health, a non-profit organization focused on engaging families and health professionals in pregnancy and newborn health is conducting a survey on family needs for newborn screening education. The goal of this survey is to learn about families’ needs and priorities around newborn screening information. The survey will inform development…


Announcing: Go Low Pro

We all know managing the PKU diet takes a lot of planning, and sometimes it’s just not possible to be THAT prepared. Or maybe you’re traveling and need a few low-protein staples, stayed later than you expected at work, and need to refuel while staying within your allowance. Maybe you’re…


The Patient-as-Teacher Project

We know you’ve got a story to tell! Mark Korson, MD, Director of Education at VMP Genetics and Jacob Athoe, a student of the Boston University Genetic Counseling Program, would like to invite you to join them as they shape a registry of PKU patients and their families, and their first-hand stories about…


Ask the Dietitian: Is Exercise Safe for People with PKU?

The short answer is YES! It is safe, and in fact, recommended. Even though research in our field cannot conclude that exercise will reduce your blood-phe levels, there is much known about the positive effects of exercise for all of us.  Exercise can: Make us feel happy Lower our risk…


Home Phe Monitor Survey

As you may have heard, there has been progress lately on the development of a home-based phe monitor. One company working closely with the FDA toward approval has asked PKU News to help by surveying the community to further refine the features of, and needs for, such a device. Since…


January is Birth Defects Awareness Month

January is Birth Defects Awareness Month.  PKU is not a birth defect but it does have some commonalities with birth defects. One connection with PKU is Maternal PKU Syndrome (mPKU). This is a complex condition which can occur in any pregnancy of a woman with PKU. mPKU occurs when a…


Breaking Down the Numbers: 2018 Progress on the MNEA

The PKU community has been working on legislative support for Medical Foods coverage for decades.  In 2018, we saw significant progress in moving forward the current iteration of this legislation: The Medical Nutrition Equity Act. Looking at this map, you can see how activism by the community—sending emails and letters,…


Spooktacular Halloween Dinner Ideas

Brenda Winarski has cooked up a Halloween Feast! If you’re looking for more ideas, check out Cook for Love’s Halloween Ideas on Pinterest. Bloody Bones Preheat oven to 425 degrees and prepare Cook For Love Pizza Dough Roll out 50g  dough into a 14 inch log and knot each end….