Category Archives: General

From left, Terri L. Klein of the National MPS Society, Catherine Warren of the National PKU Alliance and Megan Freed of Parent Project Muscular Dystrophy. In September, Catherine Warren, NPKUA's Executive Director, represented the organization...

Meet Matt, an NPKUA Mentor! Matt was born with classic PKU and has three brothers who also have the condition. Although having siblings with PKU gave him a built-in connection, Matt shared that growing up...

Pictured: NPKUA's Director of Community Engagement, Sarah Gallagher and Representative James P. McGovern, Sponsor of the Medical Foods and Formulas Access Act. On September 23rd, the Patients and Providers for Medical Nutrition Equity (PPMNE) coalition,...

The NPKUA Psychosocial Committee — made up of dedicated mental health practitioners — is excited to share this quarterly update with our PKU community. In each edition, they will explore topics related to mental health,...

Whether your loved one is starting kindergarten, returning to the classroom or preparing for college, NPKUA has resources to help students, families and loved ones feel informed and prepared for the year ahead. Visit NPKUA’s...

Meet this month's community spotlight, August! August (Auggie) is a 6-year-old who was diagnosed with Hyperphe at 7 days old. He recently started Sephience and loves that it makes his tongue turn yellow (his favorite...

More than 600 members of our PKU community traveled from 39 states and nine countries to join us in Lombard, Illinois, for NPKUA’s Living Our Best PKU Life Community Conference, July 16–19, 2026. The weekend...

We were so proud to recognize Amy Oliver as this year's PKU Hero during NPKUA's community conference weekend in Lombard, IL. The PKU Hero Award recognizes individuals who have made significant and lasting contributions to...

Interested in participating in PKU research to help move progress forward? NPKUA offers several ways to stay informed and get involved: Join the PKU Patient Registry When you create a profile in the Registry, you...

Planning a summer trip? If you’re flying with medical formula, low-protein foods, cooling packs or other medically necessary items, a little preparation can help make travel smoother. Here are a few helpful tips to keep...

Meet Kelci, one of our NPKUA mentors! Kelci is a middle school teacher living in Western Washington with her husband and their two children. Both of Kelci's children, ages 2½ and 4, have PKU and...

Need help understanding your insurance options? NPKUA’s new Insurance Navigator Support Program offers a supportive place to start. Connect with trained volunteer navigators who bring lived PKU experience and practical guidance to help you better...