National PKU Alliance

National PKU Alliance PKU is a rare genetic disorder. People with PKU cannot process phenylalanine found in all protein.

The NPKUA's mission is to improve the lives of individuals with PKU and pursue a cure.

Please join us in welcoming Grace to the NPKUA team as our summer intern! Grace is a senior at Providence College, major...
06/10/2026

Please join us in welcoming Grace to the NPKUA team as our summer intern!

Grace is a senior at Providence College, majoring in Social Science, and is also a member of the college’s women's lacrosse team.

As someone living with PKU, Grace is excited to give back to a community that has had such a meaningful impact on her life. This summer, Grace will be supporting a variety of projects, with a special focus on the Living Our Best PKU Life community conference in Lombard, IL.

We are so excited to have Grace on the team this summer and look forward to all she will accomplish while helping support our community!

We’re so proud to highlight this year’s NPKUA Affiliate Grant recipients! 💙 Thank you for the incredible work you do to ...
06/09/2026

We’re so proud to highlight this year’s NPKUA Affiliate Grant recipients! 💙 Thank you for the incredible work you do to support, connect and empower our PKU community across the US.

We look forward to seeing the impact of your events and community programs this year!

• PKU Organization of Illinois: Camp and Family Day events
• Alliance of PKU Families: APF Cares support programs
• Georgia PKU Connect: Camp Connect
• Great Lakes PKU Alliance: Low Protein Cooking Demo

📣 Our annual research grant program applications close in just 1 week! If you are an academic researcher working on PKU,...
06/08/2026

📣 Our annual research grant program applications close in just 1 week! If you are an academic researcher working on PKU, visit npkua.grantplatform.com for more details and to apply before the deadline.

📅 Proposals are due by next Monday, June 15 at 11:59pm ET. Apply today and help drive progress in research!

Visit npkua.org/support to register for this week's community call!
06/08/2026

Visit npkua.org/support to register for this week's community call!

Meet this month’s NPKUA Mentor, Kelly! 💙Diagnosed with classical PKU at birth, Kelly brings lived experience, encouragem...
06/07/2026

Meet this month’s NPKUA Mentor, Kelly! 💙

Diagnosed with classical PKU at birth, Kelly brings lived experience, encouragement and a passion for helping others feel empowered along their PKU journey. From advocating for herself in everyday situations to embracing what makes her rare, Kelly hopes to help mentees build confidence, feel supported and thrive.

“While living with PKU isn’t easy, there is strength in embracing what makes us rare!” Kelly said. “As a mentor, it is my goal to encourage and empower my mentees to ‘see the good’ in our diagnosis and equip them with the tools not just to manage PKU, but to truly thrive.”

🔗 Learn more about Kelly and NPKUA’s Mentor Program: https://bit.ly/4o78dSE

Move Your Pheet 2026 is winding down and (goodness gracious) we have a lot to celebrate with you!🥳Together, over 650 ind...
06/05/2026

Move Your Pheet 2026 is winding down and (goodness gracious) we have a lot to celebrate with you!🥳

Together, over 650 individuals came together to move, fundraise and raise awareness for the PKU community. And the results? WOW. 💙💚🩵

We raised $161,633...shooting right past our fundraising goal! 🚀

We are beyond grateful to every team captain, participant, donor and sponsor for partnering with us to make this movement such an incredible success.

Let's celebrate our TOP FUNDRAISERS! 🏆 (drumroll please)

Top Teams:
🥇 1st Place - PKU Alaska, $31,185 raised
🥈 2nd Place - Crew 4 PKU, $6,752 raised
🥉 3rd Place - Team Evan Almighty, $4,211 raised

Top Individuals:
🥇 1st Place - Brad Dickson, $3,039 raised
🥈 2nd Place - Tory Woodward, $2,548 raised
🥉 3rd Place - Mark Gralen, $2,526 raised

Prizes are coming your way 😉

Thank you for every step, every share and every dollar raised for PKU research and support programs. We can improve the lives of individuals living with PKU because of YOU!

See you next May! 🎉

Congratulations to the Class of 2026! 🎓 If you are or know a recent high school or college graduate with PKU, we want to...
06/04/2026

Congratulations to the Class of 2026! 🎓 If you are or know a recent high school or college graduate with PKU, we want to shine a spotlight on this exciting milestone!

📧 Please email a graduation photo and short bio of the graduate to [email protected] by Friday, June 19 for the chance to be featured on social media.

NPKUA was proud to attend the Society for Inherited Metabolic Disorders (SIMD) conference in May in Rio Grande, Puerto R...
06/02/2026

NPKUA was proud to attend the Society for Inherited Metabolic Disorders (SIMD) conference in May in Rio Grande, Puerto Rico. Catherine Warren, Executive Director, and Elaina Jurecki, MS, RD, Director of Research Development, represented NPKUA throughout the week.

The meeting featured sessions focused on inborn errors of metabolism, including PKU, and provided an important opportunity to connect with researchers, clinicians and others working to advance care for inherited metabolic conditions.

NPKUA also presented two scientific abstracts: one highlighting data from the PKU Patient Registry and another exploring the landscape of clinics across the United States that treat people with PKU. View the scientific abstracts here: https://bit.ly/3PPujfT and https://bit.ly/4o2Ozaz

Conferences like SIMD help foster collaboration among clinicians, researchers and patient advocacy organizations while deepening our collective understanding of PKU and the needs of the community. We look forward to attending future meetings!

As PKU Awareness Month comes to a close today, we want to say thank you. 💙From hosting in-person events to sharing your ...
05/31/2026

As PKU Awareness Month comes to a close today, we want to say thank you. 💙

From hosting in-person events to sharing your personal stories across social media, we are inspired by the outpouring of support, connection and shown throughout this month!

While May may be ending, our work to raise awareness and advocate for the PKU community continues all year! Visit npkua.org to explore upcoming events and opportunities to stay involved with us, or reach out at [email protected].

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