PKU News has partnered with several organizations who support those with Iherited Metabolic Disorders to assess the needs of our community during this time. The initial report is now available here, and the survey will be open through May 2, 2020.
In October 2018, Nutricia North America confirmed that they would no longer be importing and distributing Wel-Plan, the low-protein baking mix on which so many PKU families had relied for decades. Shortly thereafter, Cook for Love undertook a semi-scientific project to try to determine the best replacement for Wel-Plan: A…
We’re thrilled to announce that the app is available for both iOS and Android. The (35,000+) locations we’ve added so far were suggested by #lowprotein community members or provided by participating brands, but the most important part of GO LOW PRO is YOU! Adding your local favorites, reviews of restaurants…
Ongoing Clinical Trial of a Urine Test for At-Home Blood Phe Monitoring Robert A. Latour, Ph.D.; McQueen-Quattlebaum Professor Department of Bioengineering; Clemson University, Clemson, SC Researchers at Clemson University have been working over the past five years on the development of a urine test as an at-home monitoring method for…
The Partnership for PKU has been working with ALDI to try to find a way to get more products into How Much Phe for more than a year. Unfortunately, we haven’t been able to make progress, despite best efforts by both parties. Please see the statement from ALDI below regarding…
Back-to-School means back to the cafeteria. For some students, this is no problem: they eat what they eat and they don’t really care that their lunch looks different than other kids’ lunches. For others, anxieties about being different, fitting in, and having a special diet can make the cafeteria an…
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…
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…
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…
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…