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.

📣The Lifting the Limits for PKU Philadelphia Silent Auction will close tonight at 7:45 pm ET! You'll find special experi...
10/10/2026

📣The Lifting the Limits for PKU Philadelphia Silent Auction will close tonight at 7:45 pm ET!

You'll find special experiences around Philly, signed items from your favorite players and unique gifts to treat yourself!

Don't forget! Every purchase supports our mission to improve the lives of individuals with PKU. 💙

🛒 Browse auction items here: https://bit.ly/4xpMF6X

💻 Bidding from home? Register for free with a "Bid from Home" ticket.

🎟️ Attending in person? Just log in with the email you used to register for the event.

✨Happy bidding!✨

This World Mental Health Day, remember that caring for your mind is part of caring for your health.Managing PKU takes re...
10/10/2026

This World Mental Health Day, remember that caring for your mind is part of caring for your health.

Managing PKU takes real mental energy, and the condition itself can affect mood and focus. If you’ve noticed these challenges in yourself or a loved one, you are not alone, and support is available.

In NPKUA’s August PKUniversity webinar, “Identifying and Managing Mood and Executive Functioning Deficits,” Dr. Eugene Lubliner explains how to recognize these concerns and shares practical strategies for day-to-day management: https://bit.ly/4ywIWoN

We stand with our PKU community to raise awareness, offer support and advocate for care that sees the whole person.

Thanks to you, five new research grants totaling $436,000 are now advancing PKU science! 🎉Your generosity has helped NPK...
10/09/2026

Thanks to you, five new research grants totaling $436,000 are now advancing PKU science! 🎉

Your generosity has helped NPKUA fund more than $6.8 million across more than 90 research projects to date, bringing us closer to better treatments and a cure.

See what your support is making possible. Join us Oct. 29 for our next PKUniversity webinar, "Funding the Future: 2026 NPKUA Research Grant Projects," for an inside look at each grant. 🔗Register on Zoom: https://bit.ly/4zrW5jN

We are pleased to share a message with you today from Nutricia Metabolics-US, an NPKUA sponsor.*PKU PhenylAde GMP Drink ...
10/07/2026

We are pleased to share a message with you today from Nutricia Metabolics-US, an NPKUA sponsor.*

PKU PhenylAde GMP Drink Mix is available in two delicious flavors - plain for those who love the classic taste and vanilla for those who crave a hint of something different.

Request samples at https://www.nutriciametabolics.com/en-us/shop/Samples

*This post is sponsored by Nutricia, their views and offerings are their own and do not reflect the opinions, values or endorsements of NPKUA.

We're proud to be at SIMD's North American Metabolic Academy (NAMA) in Chicago today. The academy was created to educate...
10/05/2026

We're proud to be at SIMD's North American Metabolic Academy (NAMA) in Chicago today. The academy was created to educate genetics trainees about metabolic disorders and address the educational needs of the metabolic workforce.

A very special thank-you to Scientific Advisory Board member Soo Shim for representing NPKUA at our booth! Learn more about this event at SIMDNAMA.org.

Visit npkua.org/support to register for one of our upcoming community calls!
10/05/2026

Visit npkua.org/support to register for one of our upcoming community calls!

The Lifting the Limits for PKU Philadelphia Silent Auction is NOW OPEN! 🎉 Bid now on unforgettable experiences and one-o...
10/04/2026

The Lifting the Limits for PKU Philadelphia Silent Auction is NOW OPEN! 🎉

Bid now on unforgettable experiences and one-of-a-kind items. Every bid supports NPKUA's mission and our PKU community. The auction closes Saturday, Oct. 10, at 7:45 pm ET, so don't wait!

Browse auction items: https://bit.ly/4rLMode

💻 Bidding from home? Register for free with a "Bid from Home" ticket.

🎟️ Attending in person? Just log in with the email you used to register for the event.

We’re looking forward to seeing many of you in Philadelphia next weekend for Lifting the Limits for PKU! 🎆A special than...
10/03/2026

We’re looking forward to seeing many of you in Philadelphia next weekend for Lifting the Limits for PKU! 🎆

A special thank you to our Pearl Sponsors, Beam Therapeutics, Evernorth Health Services, NovaFerrum and Otsuka America Pharmaceutical, Inc. for helping make this memorable evening possible in support of our PKU community!

Join us Tuesday, October 6 at 12:00 pm ET for our next PKUniversity webinar, PKU on the Plate: From Diet Plan to Delicio...
09/29/2026

Join us Tuesday, October 6 at 12:00 pm ET for our next PKUniversity webinar, PKU on the Plate: From Diet Plan to Delicious with Cycle Pharmaceuticals! 🍽️

From building balanced PKU meals to refreshing familiar favorites, adapting family dishes and tackling food fatigue, this session will offer practical guidance for individuals with PKU and their loved ones to use at home, school, college and beyond.

🔗 Register on Zoom:
https://bit.ly/4xeXRTA

Thank you to Alex and Mikayla Penn for hosting the first annual "PKU Classic" in Cedar, Minnesota! ⛳Their family planned...
09/27/2026

Thank you to Alex and Mikayla Penn for hosting the first annual "PKU Classic" in Cedar, Minnesota! ⛳

Their family planned a PKU fundraiser at a local golf course in honor of their daughter, Dani. Don't miss her outfit...she's "new to the club" and undoubtedly the sweetest new member of both the golfing AND PKU community 😉.

Their friends and family stepped up in a big way to support their passion, raising over $5,500 towards PKU research!

To Alex, Mikayla, Dani and their friends and family — we are grateful for you!

If you'd like to take your favorite activity and turn it into a fundraiser, please let us know or visit our website: https://bit.ly/4tziAkx! We would love to brainstorm with you and help make it happen 💙.

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Roanoke, VA
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