The PKU Action Group has worked to create and support activities that encourage children with PKU to learn excellent diet management and to experience life fully.
The PKU Action Group's activites include:
2007 Annual Report
Download the 2007 Annual Report
2006 Annual Report
Download the 2006 Annual Report
A video for families of newborns that features children currently receiving treatment by the PKU clinic in Washington state. It has been sent to clinics across the country and can be ordered through the Children's PKU Network. It is also available for download on the University of Washington PKU Clinic website.
Maternal PKU - Choices
You Can Live With:
A video presenting up-to-date information about maternal PKU and the importance of making well-informed decisions prior to pregnancy. Members of the UW Adult PKU Clinic generously volunteered to share their experiences about this important subject. More information about the video, including how to obtain a copy, is available on the University of Washington PKU Clinic website. It is also available for download.
The Parent Mentor Program was established to formally provide new families with support from other families with children with PKU.
Infant Starter Kits, valued at over $150, are provided to families of newly diagnosed infants with PKU in Washington State. The Starter Kit includes a PKU PAL, a scale for weighing and measuring formula and food, a Low Protein Food List for PKU, the Low Protein Cookery for PKU cookbook, and a can of infant formula. The PAG appreciates donations to help cover the costs of the Infant Starter Kits.
Science Night is intended to provide families with up-to-date scientific information about PKU, as well as an opportunity to build parent involvement. Take a look at past events:
Science Night 2004
Camp Sealth provides an opportunity for children who receive care from the University of Washington PKU Clinic to attend a Campfire Boys and Girls camp on Vashon Island. The PAG secures scholarships for campers and donations of low protein foods.
View the final reports to see what fun campers have had! (Note: these are PowerPoint presentations. If you do not have PowerPoint installed on your computer, download Powerpoint Viewer from Microsoft.)
A scholarship fund for seniors with PKU, graduating from high school in Washington State, is supported by the PAG. All seniors with good academic standing, who have received acceptance to an accredited institution, are encouraged to apply. (Accredited institutions include: four-year colleges, two-year colleges, community colleges, and vocational or technical colleges). Applications must be received by July 1.
For more information and application materials, click here.
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A distribution list has been established to provide PKU Action Group members with information about PAG and related events. More information is available on this website.