PKU News recently announced that we’re changing our name to flok and expanding our mission. This is one in a series of posts designed to explore this change. We’ll also continue to add to our FAQ. Please feel free to reach out to [email protected] or contact us through social media with additional questions.
F-L-O-K or flok?
After announcing that PKU News is becoming flok, the most common question was, "What is flok?" While at first glance "flok" seems like an acronym, we chose the name to evoke the flocks we see in nature. A flock is a community that moves; it goes somewhere. flok is an expression of our goal to support each other and make progress together. Our logo has four colors to underscore the diversity of our community, which includes different conditions that share a single goal: to continuously improve our care and accelerate scientific progress to benefit the entire flok. Within the larger flok, there are smaller floks: the PKU flok, the Propionic Acidemia flok, the MSUD flok, etc. As a collective—within our smaller floks and the overall flok—we work together to support each other and to better describe, define, and improve our lived experience.
What is flok?
flok is a community: we have 35 years of experience supporting those with inherited metabolic disorders. We have built the relationships necessary to effectively serve our community, including relationships with thousands of individuals and families. Whether you were an original subscriber to the PKU Newsletter or you joined us for the first time at Family Camp last June, you are a part of the flok.
The flok app helps those in our community better manage and understand their health, communicate with their clinicians, and engage with their community. More details about the app's goals and functionalities will be explored in a forthcoming article, but you can see an initial description of the features here.
The flok research platform breaks new ground by enabling individuals with inherited metabolic disorders and their caregivers to guide research. For the first time, we’ll be able to integrate patient-reported data with clinical, biometrics, and genetic records. With the aid of machine learning and AI, we will use our collective data to learn more about our disorders in the next 5 years than we have in the last 50. Where we had thousands of data points before, we’ll now have billions. This enables our community to guide research and improve treatment and our overall quality of life.
Who is flok for?
If you live with an inherited metabolic disorder or care for someone who does, flok is for you. We serve all inherited metabolic disorders of protein metabolism, including PKU, Classical HCU, MSUD, Tyrosinemia, Urea Cycle Disorders, and Organic Acidemias.
I'm looking forward to sharing more soon. My next few updates will cover the features of the flok app, details on our expanded camp offerings and community support, as well as our mission and vision for flok in 2024 and beyond.
