Articles by Sarah Chamberlin

Introducing flok, the Future of IMD Community, Care, and Scientific Progress

As we celebrate Newborn Screening Awareness Month, PKU News is thrilled to share important news for everyone connected to our inherited metabolic disorders community: in October 2023, National PKU News will become flok, an organization dedicated to rallying the inherited metabolic disorder community to continuously improve our care and accelerate…

PTC Therapeutics Announces APHENITY Trial results

PTC Therapeutics has announced that their APHENITY trial achieved its primary endpoint with sepiapterin in PKU patients. Details can be found here, and their recent presentation on results, here.  Questions? Email patientengagement@ptcbio.com. PKU News shares relevant information with the IEM community but does not endorse any company, product, or trial.

Advocacy Resources Summer 2022

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…

The State of Metabolic Formula Access in the U.S., Summer 2022

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…

2022 Family Camp Wrap-Up!

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,…

PKU Family Camp Moves to PKU News!

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…

PKU News Announces Production of The Low-Phe Life by Kurt Sensenbrenner

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,…

Phe, Fi, Pho, Hm…

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…

What’s New on the Back of the Pack

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…