The Phebe Founding 100: unlocking the future for PKU
The Founding 100 is a membership campaign for people with PKU and for the people who carry the PAH gene. It runs through December 31, 2026.
Most PKU studies run on small datasets, often measured on one number: blood phe. That is one reason so many questions about living with PKU are still open. A hundred members logging real life, in Phebe, is a larger dataset than most of those studies had, and it updates in real time.
If you have PKU, you already know the parts of your life a phe level does not show. Phebe records them: the food, the formula, the sleep, the energy, the labs. Your record stays yours. When you choose to share it with the co-op, it joins a cohort that is ready the day a researcher asks a question, and you are rewarded for what you contribute.
If you are a PKU parent, you are a carrier, and new evidence says carriers may not be unaffected. The Founding 100 is for you too. Rethinking the unaffected PKU carrier
Joining takes two steps: create your account, then opt in to the co-op. Phebe is free on the web, iPhone and Android.
The Founding 100 Rewards
Phebe has pledged $1,000 for Founding 100 member rewards. When the 100th member joins, we will release the rewards to members, who can claim them or designate a PKU-focused charity. The offer is limited to individuals. Individual rewards are capped at $100.
PKU hero: Akshay Gurav, winner, PKU Commons Hackathon
Akshay Gurav, a 2026 Information Technology graduate of Dr. J. J. Magdum College of Engineering in Maharashtra, India, has won the $2,000 Phebe hackathon prize! He contributed algorithmic efficiencies to the phe estimator, a repeatable hackathon framework, and a PKU-focused food management app. All three are open source and available for future projects. Akshay's contributions show what a global network focused on PKU can do.
LAT1 Competition Model
One of the newer things we have tried in our family is LNAA competition therapy: a formula made from the other large neutral amino acids, which compete with phe for the one transporter into the brain, so less phe gets in. Phebe assistant director Ryan Kilbride struggled to find a formula product that worked for his college lifestyle. At the NPKUA annual meeting in July he tried Cambrooke's PKU Refresh AA and reported, "I can feel it cleaning my brain." At the ESPKU meeting in Copenhagen this week, we learned that some countries, Denmark among them, have used the LNAA competition approach for decades. The LAT1 Competition Model illustrates the research that shows how and why it works for him.
View PKU Science Illustrated at phebe.life
About Phebe
Phebe Corporation is a 501(c)(3) nonprofit patient-and-family-led research organization dedicated to improving the lives of people affected by PKU. Phebe users earn rewards they can choose to keep or donate to PKU and rare disease research organizations. Phebe is founded by North Carolina PKU family members Nina, Terry, and Ryan Kilbride.