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Two NPKUA Board Members were on Capitol Hill yesterday meeting with Senator Britt’s office to discuss the critical issue of the termination of The ACHDNC. We are grateful to them for being powerful voices for the rare disease community!

Top individual will receive four family member registrations and a free hotel room at our Community Conference July 16 - 19 2026 and top team leader will receive a $250 gift card to host a team party. 2nd and 3rd place individuals and team leaders with an NPKUA cooler!

Living with PKU has not always been easy for Kyler. Growing up, he often felt left out when he couldn’t eat the same foods as his friends. “Just don’t let them stop you from having fun and doing your own thing," he says. Visit mailchi.mp/npkua/your-pku… to read more about Kyler!

Join us for this week's community call to share stories, build connections, and discuss topics important to you! Email [email protected] to register. #PKU #NPKUA

We’ve been walking together throughout May to support the PKU community as part of #MoveYourPheet. It’s been an incredible way to connect as a team while raising awareness for those living with phenylketonuria (PKU), a lifelong rare condition that still lacks targeted treatments.

May is both Mental Health Awareness Month and PKU Awareness Month, a powerful reminder that managing PKU goes beyond diet. This month, we stand with the PKU community to raise awareness, offer support and advocate for care that sees the whole person!

“As a board, we believe leadership means showing up. This month, we’ve biked, hiked and moved together to support NPKUA, because every step forward brings us closer to change!”   Thank you all for your continued advocacy!    #NPKUA  #PKUAwareness #moveyourpheet

Thank you, PTC Therapeutics, for being a presenting sponsor of our On the Horizon one-day regional conference. We can’t wait to bring our PKU community together on Saturday, September 6 in San Diego! #PKUOnTheHorizon #NPKUA

Email [email protected] to register for this month's community calls!

We’ve crossed the finish line of our annual Move Your Pheet challenge! Thank you to all of the sponsors, participants and donors who took part in this movement. Your support truly makes a difference in the lives of those with PKU and their families. #NPKUA #moveyourpheet

NPKUA was proud to attend the 2025 Abbott Metabolic Conference last week in Columbus, OH. The conference provided insightful sessions with topics related to the management of metabolic conditions, including PKU. We're excited to represent the PKU community at future meetings!

We’re grateful to have BioMarin as a presenting sponsor of the 2025 On the Horizon Regional Community Conference. Thanks to their support, we’re bringing the PKU community together for a meaningful day of connection on Sept. 6! Learn more and register: bit.ly/4jH7OCt

Meet Daniel, an adult with PKU and today's community spotlight! Daniel, 46, was diagnosed with PKU at 17 months old and responded quickly to treatment after being placed on a low-protein diet. You can read his full story in our June newsletter: bit.ly/43PhTHP

Join us for this week's community call to share stories, build connections, and discuss topics important to you! Email [email protected] to register. #pku #npkua

Join us virtually next Tuesday, June 17, 12:00 -1:00 pm ET for our next PKUniversity webinar, "Navigating College with PKU: Strategies for a Successful Transition.” Learn more and register to join us! bit.ly/4kzVMMy

Congratulations to the Class of 2025!🎓If you are or know a recent high school or college graduate with PKU, we want to shine a spotlight on this exciting milestone! Email a photo and bio of the grad to [email protected] by 6/18 for the chance to be featured on social media.

Children’s Hospital of Philadelphia recently announced the first patient to be treated with personalized gene therapy. This marks a step forward for gene therapy and how it may be used for other genetic conditions like PKU in the future. Learn more: bit.ly/3ZwsJ4e

Happy Father’s Day to all of the wonderful dads in our PKU community! Your love, support and dedication bring strength and comfort to your families every day. Today, we celebrate you! #FathersDay #NPKUA

Join us for this week's community call to share stories, build connections, and discuss topics important to you! Email [email protected] to register. #pku #npkua

Join us today from 12:00 to 1:00 p.m. ET for our PKUniversity webinar: “Navigating College with PKU: Strategies for a Successful Transition.” Learn more and register here: bit.ly/4kzVMMy