flok's mission is to rally the inherited metabolic disorder community to continuously improve our care and accelerate scientific progress.
Founded in 1989 by dietitian Virginia Schuett, National PKU News was the nexus of the PKU community for decades. In July 2023 we became flok, expanding our outreach to all inherited disorders of protein metabolism and focusing on research in addition to support.
For decades, National PKU News published a newsletter three times per year.
Pre-internet, the newsletter was the sole conduit for community connection. It included everything from research to recipes, from announcements of clinical studies to profiles of Guthrie-Koch scholarship recipients.
Many in our community still fondly remember opening the mailbox to the sole connection they had to others with PKU.
First published in 1989, the Low Protein Food List for PKU was one of the organization's early innovations. Before "the book" or "the food list" or "the PKU Bible," as it was sometimes known, dietitians nationwide spent their time creating individualized food lists for their patients. This meant duplicated effort, wasted time, and inconsistency between clinics.
With one consolidated resource available, patients and caregivers had an accessble tool for dietary management and clinicians had more time to treat.
Virginia Schuett and her collaborator Dorthy Corry published three essential books for low-protein cooking:
Today, many of these recipes have beeen incorporated into Cook for Love, the site founded by our Board Member, chef, and PKU parent Brenda Winiarski.
In 2014, we launched HowMuchPhe.org, bringing the data in the Low-Protein Food List online. This resource gave thousands of individuals and families access to vital dietary information in the palm of their hands.
With protein, phe, and calorie data for more than 10,000 foods, HowMuchPhe.org has over 2500 subcribers and more than 1,000 daily users.
The web app allows users to search for foods, track intake and levels, create recipes, and more. These features and more are part of the flok app.
In 2021, Board Chair Jeb Haber and Executive Director Sarah Chamberlin sat down to consider the future of National PKU News. With a combined experience of two decades in the PKU community, several things were clear:
The transformation to flok is driven by our mission to rally the inherited metabolic disorder community to continuously improve our care and accelerate scientific progress.
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