Author Archives: Leanna Annunziato

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...

Meet Kelly, one of our NPKUA mentors! Kelly is 26 years old and was diagnosed with classical PKU at birth. One of her three brothers also has PKU, so supporting each other through their “diet...

We are deeply grateful for the dedication, leadership and perspective Lillian Isabella brought to NPKUA throughout her six years of volunteer service. Lillian served on NPKUA’s Board of Directors from January 2020 to December 2025...

Meet this month's community spotlight, Susan! Shuishan (Susan Hu) is an adult living with Classical PKU in Maryland. She currently manages 9 grams of natural protein with Palynziq, along with diet and medical formula. Susan...

A special thank you to Clarissa Henke, NPKUA’s Advocacy Committee Co-Chair, for representing our PKU community on Capitol Hill during Rare Disease Week with the EveryLife Foundation for Rare Diseases. Reflecting on her experience in...

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,...

Meet Nicole, one of NPKUA's fabulous peer mentors! Nicole is a 30-year-old nurse who lives in Oregon with her wife. Nicole planned their wedding last year while balancing travel, work and PKU! She loves to...

We invite our community to nominate candidates for the PKU Hero Award, which will be presented at the 2026 NPKUA Community Conference, held July 16–19, 2026, in Lombard, IL. The PKU Hero Award recognizes individuals...

NPKUA’s sixth annual Scientific Conference took place February 26–28, 2026, in New Orleans, LA, bringing together leaders from across the PKU community. More than 100 invited healthcare providers, researchers, industry partners and regulatory representatives gathered...