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 scientific progress. Read on for the why and how of this transformation, and your important role in it.
Our Legacy of Innovation
This change does not come suddenly. For years, PKU News has led the community through innovation: The Low-Protein Food List for PKU revolutionized dietary treatment for PKU and similar disorders; 27 years of the PKU Newsletter supported, connected, and educated our community long before technology made it so easy; HowMuchPhe.org put the data we need for daily management into the palms of our hands, and Cook for Love gives us the opportunity to delight in food on the low-protein diet.
Our Stories, Our Data, our Future: Enter flok
As we enter our 35th year of service, our community still faces considerable challenges—limited and inaccessible treatments, fragmented clinical care, little longitudinal data, and insufficient understanding of the lived experience of these conditions. Today’s technology empowers patients and caregivers to transform how research is performed and determine the goals of that research. flok is a revolution driven by you, the true experts of your own experiences.
What Will Change with flok
- We will continue our tradition of serving the PKU community while also inclusively serving the broader inherited metabolic disorder community
- We will harness patient data to guide and accelerate research that directly benefits our community
This isn’t merely a rebrand. It's a shift in philosophy from a support-centric model to one that’s data-driven, aligned with the trend toward participatory medicine. flok is not just a name; it expresses our ethos of unity, empowerment, and an unyielding commitment to progress.
Doubling Down on Community Support
The support and resources you’ve relied on—for months, years, or decades – will continue. We have hired Kristen Vanags, a veteran leader in our community, as Director of Community Engagement. The nutritional resources we provide through HowMuchPhe.org will be incorporated into the flok app with significant improvements; CookForLove.org will remain a free resource for the entire community; and in 2024, we’re adding a second Family Camp on the East Coast, to complement our Oregon Family Camp, which, combined with our virtual camp, brought together more than 1000 members of our community in 2023.
Your involvement is key. Sign up for updates at flok.org and stay tuned for details on the forthcoming flok app.
Thank you for being an essential part of our past, present, and future. Together, we aren't just adapting to change; we're leading it.