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.
Jenn is an expert in medical nutrition therapy related to inborn errors of metabolism. She discovered her passion for rare diseases early in her dietitian career and had the good fortune of training with some of the top researchers and providers in the field. She has been an active member of Genetics Metabolic Dietitians International since 2007 and has served in various leadership and committee roles therein. Jenn has been an active member of the PKU Northwest community for many years. Jenn is passionate about progressing the science of rare conditions, specifically, improving quality of life related to the foods we eat & how we eat them, newborn screening/disease detection, and health equity. She recently completed a master’s in public health to expand her knowledge related to these passions.
Sarah is a Founder and the Executive Director of flok. Prior to joining (then) National PKU News in 2015, she worked in nonprofit advocacy and founded a tech development firm. She is the parent of two daughters, one with PKU born in 2013. Isabel’s PKU diagnosis was the impetus for the development of How Much Phe.
Michael is a Co-Founder and the Director of Operations of flok. He has a background in engineering cloud and system architecture with a focus on operational reliability. More than once, he has been accused of breaking the entire internet, which he says is only hearsay. Michael is connected to the inherited metabolic disorders through close friendship.
Kristen is the Director of Community Engagement at flok and has a teenage son with PKU, born in 2006. She co-founded Georgia PKU Connect in 2008 (serving as President for 10 years) and co-directs their annual family camp. Kristen also co-chairs Georgia’s Newborn Screening Advisory Committee, one of her favorite volunteer roles. She is deeply passionate about access to medical nutrition for individuals with inherited metabolic disorders and has led state and federal advocacy initiatives for over a decade. Kristen previously chaired the Southeast Newborn Screening & Genetics Collaborative Consumer Alliance and served on the boards of the Southeast Regional Genetics Group, the National PKU Alliance, and National PKU News. Kristen lives in Atlanta, Georgia where she can cheer on her favorite team, the Georgia Tech Yellow Jackets.
Nikki went to Texas A&M, has a background in health education and is a certified radiation therapist. She has 2 children, including one with Argininosuccinic Acidemia (ASA) a urea cycle disorder. She joined flok in 2022 and ran Family Camp and Community Engagement efforts before moving into her current role. Her hobbies include playing video games, D&D, reading, and practicing Brazilian Jiu Jitsu. Nikki’s family was featured in S2E5 of the Low Phe Life.
Ameya is the Director of Machine Learning at Dropbox. He’s passionate about building products that help people by advancing AI. Ameya previously worked at Microsoft building AI powered features and products that help people deliver their best work and protect people from socially engineered attacks on the Internet. Ameya is active in the Seattle startup community and has helped several startups with product development, technology commercialization, strategy, and go-to-market initiatives.
Jerry has a 9 year old son (Hudson) with PKU. He is the organizer of 8 large-scale golf event fundraisers alongside Jack and Barbara Nicklaus to support the PKU community. Jerry served or serves on the boards of flok, NPKUA and PKU Hope Foundation. He is a partner at KPMG LLC and lives in Northern Virginia with his wife and 3 kids (and their grandma).
Glenn is the grandfather of Olive Haber, born with PKU in 2009. He is Treasurer and Secretary of flok, and chair of the Fundraising Committee. For over twenty years Glenn has been active in philanthropy serving in board and leadership roles for several non-profit organizations, including the NPKUA. Prior to retiring in 2008 Glenn’s working career was in finance and investment management where he was President and CEO of a Seattle mutual fund and investment adviser.
Jeb is the father of a teenager with PKU and the President of flok’s Board of Directors. He has been on the board of (then) National PKU News since 2009 (President of the board since 2014). His professional background is in software leadership with a focus on AI & consumer safety (Microsoft, retired). Jeb loves family camp and this community – he designs and manufactures family camp craft projects and was President of PKU Northwest for several years.
Brittany is a Metabolism Nurse Practitioner at Boston Children’s Hospital and an adult with PKU.
Jackie is the flok Guthrie-Koch Scholarship Committee Chair, the Director of Public Engagement at the National Humanities Center, and an adult with PKU. She was a Major Award recipient of the Guthrie-Koch PKU Scholarship in 2006.
Adrian works in Financial Controls and Compliance at Microsoft. He serves on the flok Finance Committee and previously held the position of Treasurer. Adrian has a daughter with MSUD and likes to fly fish, and play and coach soccer.
Whitney is a data privacy and technology partner at K&L Gates who lives on Bainbridge Island, WA with her 3 kids, spouse and various animals. She studied genetics before law and now uses her data privacy and intellectual property expertise to advise companies on their data and technology strategies. She’s hopeful that technology and research will create positive lifestyle developments for individuals with inherited metabolic conditions and other individuals with chronic conditions while allowing agency over personal data to remain intact.
Daelyn is a member of flok board of directors and flok Scientific Advisory Board Chair. She is a resident at Children’s Colorado in the CU Denver combined pediatrics & medical genetics residency program and was a PhD in Cary Harding’s lab at OHSU working on advancing CRISPR/Cas9 gene editing in PKU. Daelyn’s first triathlon was a full Ironman, which she did 6 months after shattering her distal fibula. Daelyn considers the flok community her family. “This community is my inspiration and my motivation to make the world a better place for them and their families.”
Brenda Winiarski is the founder of Cook for Love. Prior to having children, Brenda was a speech language pathologist with a specialty in Early Intervention and Feeding Issues. After her daughter was diagnosed with PKU, Brenda enrolled in culinary school. Cook for Love was launched in 2009. Its Facebook group is the largest and most active online support group for Inborn Errors of Metabolism (IEM), with almost 9,000 members. Brenda volunteers at her local clinic, helping patients with various IEM at different stages in life.
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