News

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….


Well, We Need a New Baking Mix Plan

As you may have heard, Nutricia has announced that they will unfortunately no longer be able to distribute Wel-Plan, a baking mix many of us have relied on for a long time. Nearly all of the baking recipes in Virginia Schuett’s cookbooks use it, as do many other recipes you’ve…


Disaster Preparedness and PKU

As Hurricane Florence approaches the East Coast of the U.S., and we remember the events of September 11, 2001, it’s worth reviewing how to be prepared for crisis situations so that we can manage PKU or other disorders at these times. While we’re trying to keep our families safe, and…