The PKU Northwest Alliance is a non-profit 501c(3) organization formed in 2003 by a group of motivated parents who wanted to connect with other families living with Phenylketonuria (PKU) and the allied metabolic disorders. Our mission is to create a supportive community for PKU families, promote healthy living choices and offer resources to help manage the PKU diet.

A major component of our work is organizing an annual family-oriented camp that offers the PKU community an opportunity to come together for a relaxing weekend of fun in the high desert of Oregon.   Our camp includes cooking workshops, support and networking opportunities, and speakers who discuss the latest medical breakthroughs related to this rare metabolic disorder. The camp continues to grow year after year, offering something for every age group.

In the fall of 2017 the PKUNW Board of Directors approved modifications to the charter to extend the organization’s mission to include the broader Northwest region.  Moving forward PKUNW will be providing community engagement opportunities and services in WA and OR throughout the year.  This means we’ll plan and host the same amazing camp each year, but we’ll also host more regional events and begin some additional support programs in conjunction with the regional clinics.  We’re excited for the expansion of service and look forward to building a more robust year-round support network in the Pacific Northwest.

We manage a Facebook group for those families with PKU living in the NW, which is a great place to ask questions, share stories and connect with one another.


Camp Volunteers:

We are always looking for volunteers to help make camp a success! Volunteer opportunities include a variety of options like fundraising, organizing a kid's activity, helping with meal prep and coordinating logistics prior to camp. Reach out by emailing us as camp@pkunw.org to find out more details.

General Volunteers:

If you are interested in helping with programs in WA and OR outside of camp, please let us know.  We’ll need support hosting and organizing events throughout the year.  Please contact us at info@pkunw.org if you are interested.