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 was filled with education, inspiration and countless moments of connection with our PKU community. Attendees participated in educational sessions, breakouts, special events and connected with 28 different exhibitors.
A few of our session highlights included “Moving with PKU: Exercise, Fitness and Everyday Life,” “At-Home Phe Testing: Current Progress and Future Possibilities Overview” and an inspiring keynote address from Patricia Guthrie, daughter of Dr. Robert Guthrie, titled “Margaret Doll and Uncle Bob: Their Story Changed Your Life.”
We also welcomed 130 babies, toddlers, children and teens to our Kids and Teen Zones, where they enjoyed dedicated programming and activities, including kids’ yoga, a pizza-making demonstration, a magician, field trip and more.
$150,000 Raised for Home Phe Monitor Approval and Development
We closed the weekend with a dinner and dance party, complete with sparkly wands, glow sticks and a goal-busting fundraiser! We challenged our PKU community to raise $50,000 to support the development and approval of home Phe monitors. Thanks to the generosity and unwavering support of the Tognarelli Family, every dollar donated towards this goal was matched. Our community rose to the occasion, exceeding our goal and raising a total of $150,000 in support of home Phe monitors.
We’re deeply grateful to NPKUA Affiliates PKU Organization of Illinois, PKU Alaska, Minnesota PKU Foundation and Great Lakes PKU Alliance for going above and beyond to champion this effort, and to our conference family and broader community who came together to show their support.
Conference Attendee Reflections
“I learned so much this weekend, and this conference felt very pivotal in acknowledging that we are all on different paths with our PKU since there are so many treatment options now, which is awesome! Coming together this weekend, it was very clear that we are so much more similar than we are different.” – Nicole
“NPKUA 2026 was a whirlwind, an inspiration, and a one-of-a-kind experience. We were thrilled to meet so many great people, and to keep learning about new advances that support the PKU community.” – Vitaflo, Conference Sponsor
“At the conference, I had the incredible honor of sharing our story…raising two children with PKU whose experiences haven’t always fit neatly into a box — and how I’ve learned that every PKU journey is different, every child is unique and every family deserves to be heard. To the PKU community — thank you for embracing our family, encouraging me and reminding me that none of us walk this path alone.” – Kirsten
“A highlight for me was meeting Patricia Guthrie, hearing her stories and being able to thank her for the work her and her father Dr. Robert Guthrie did in developing newborn screening for PKU. The reality is, without her father, I would not be here doing what I do.” – Annie
“Every mile was worth it. From educational sessions to dance parties, hugs with friends, and making memories as a family — our first PKU Conference was one we’ll never forget. See you in 2028!” – The Haddocks Family
“Maeve (age 4) has said almost every day since: ‘I miss the conference, can we go back?’ Thank you, NPKUA for the most magical weekend! We can’t wait for Orlando.” -The Nunes Family
From beginning to end, we are grateful to everyone who helped make this year’s community conference such a success.
We hope you will save the date for our next Community Conference, Making Magic Together, happening July 20–23, 2028, in Orlando, Florida, as we celebrate NPKUA’s 20th anniversary. More details will be shared soon!