Whether you’re gearing up for Rare Across America, or reaching out to meet you Senators and Representative when they are in-district in August, these resources will help you advocate fo the Medical Nutrition Equity Act (MNEA)! Questions? email info@pkunews.org. If you missed our two online events, you can watch them…
July 18, 2022 marked exactly 5 months since Abbott issued a voluntary recall for several formulas manufactured at its Sturgis, Michigan facility. Although no metabolic formulas were directly involved, the recall and subsequent plant closures continue to massively affect our community. This update is designed to provide insight into the…
New Update Here November 2022: As you may have heard from your clinic (or social media), Cambrooke has reformulated its Glytactin and Tylactin RTD products (with the exception of Glytactin RTD 15 Lite and Tylactin RTD 15 Chocolate). We heard from the community that this transition was unexpected, and unwelcome,…
2022 Camp Stats Virtual Campers Total Campers: 325 New Campers: 224; Returning Campers: 101 Disorders Represented: PKU, MSUD, UCD, Tyrosinemia & other low-pro disorder Campers from 3 Countries, 40 U.S. States and 2 Canadian Provinces In-Person Campers Total Campers: 151 New Campers: 86; Returning Campers: 65 Disorders Represented: PKU, MSUD,…
In 2021, in the midst of the pandemic, more than 350 people from 44 different states or provinces in 4 countries were able to come together at the first virtual PKU Family Camp hosted by PKU Northwest. PKU News had the honor of sponsoring many of these participants. Following this…
Remember the first time you felt like someone else really understood what it was like to have PKU? Or maybe you’re still waiting for that moment… Well get ready, because we’re thrilled to announce the launch of a new animated documentary series by filmmaker Kurt Sensenbrenner, an adult with PKU,…
Who doesn’t love a good Pho noodle bowl? They’re portable, tasty, quick to prepare, and come in lots of flavors. But our recent analysis has shown you should use caution when relying on the nutrition facts panel of these products when considering their suitability for your diet. This article does…
Noticed some changes on the Nutrition Facts Label? New labels are rolling out, and some of the changes might throw you off. Here’s a primer on what’s going on: There are two types of label updates: Formatting and content updates dictated by FDA. We’re currently seeing new labels based on…
PKU News was pleased to present a research poster in the category of Innovative Research at the 2020 NORD Rare Diseases and Orphan Products Breakthrough Summit. The poster examines the use of the Simplified Diet for trackers on How Much Phe, analyzing the population of users and the nutritional and…
Starting school can create a lot of anxiety, not just for students, but also for parents of children who require a low protein diet. We may ask ourselves “how will they get their formula in?”, “how will we manage the low protein diet?”, “My child has learning issues related to…