What is the National PKU News Organization?

Professional and Personal Tidbits

National PKU News is a non-profit organization located in Seattle, Washington. It is dedicated to providing up-to-date, accurate news and information to families and professionals dealing with phenylketonuria. I started the organization in the Spring of 1989, after 16 years as nutritionist for a large PKU clinic in Madison, Wisconsin. The organization relies on generous donations from subscribers to continue thriving (all donations are tax-deductible for US residents).

National PKU News now has over 2000 subscribers who receive the organization’s newsletter. Most subscribers are from the US, but an increasing number are from other countries (35 countries are now represented among subscribers, from Canada, Western and Eastern Europe, South America, East Asia, and the Middle East). Subscribers include parents, young adults with PKU, professionals, grandparents, relatives, and other persons connected to families of affected persons. Subscribers also includes some families of children with other inherited metabolic diseases requiring a low protein diet. Please see the section "What is the newsletter?" for information about newsletter content.

In addition to publishing the newsletter three times a year, I also produce and publish educational materials for PKU such as the Low Protein Food List and various cookbooks, including Low Protein Cookery for PKU and Apples to Zucchini: A Collection of Favorite Low Protein Recipes. I also respond to thousands of questions and requests from subscribers via telephone, letters and e-mail messages.

National PKU News has an excellent Board of Directors—Cris Trahms, MS, RD from the Seattle PKU Clinic and Donna Jahn, PKU parent from Mountain View, California.

Contrary to what many people think, however, I have always been and am still the only employee of the organization. At one time, we had a grandparent volunteer who assisted me in the office, but not for several years. That means when you contact the organization, you should not be surprised when I answer your call or letter —- there is no one else here! I also hope that knowing I am the only one here will help you to be patient in getting a response. I have a lot to do to keep National PKU News going, and an ever-increasing amount of correspondence.

National PKU News rents a small office in a privately owned building in Seattle. It is not connected to any university, hospital, or PKU treatment program. Running National PKU News is my full-time job; I no longer am involved in clinical practice (but keep up on the clinical scene through many contacts with families and professionals).

Thank-you for your interest in National PKU News. I would be delighted to welcome you as a subscriber! You can use this order form.

Publications of National PKU News Director

1. Schuett, V.E. Low Protein Cookery for Phenylketonuria., first edition, Madison, Wisconsin. University of Wisconsin Press, 374 pages, 1977.
2. Taylor, M., and Schuett, V.E. You and PKU. Waisman Center, Madison, Wisconsin, 1978. (Also translated and reprinted in Japan, 1983 and translated and reprinted in Argentina, 1995).
3. Dyer, D.G., Schuett, V.E., and Ganther, H.E. Blood Selenium and Glutathione Peroxidase in Children with PKU on Diet Therapy. Nutrition in Transition, Proceedings Western Hemisphere Nutrition Congress V., eds. P.L. White and N. Selvey, American Medical Associatrion, Monroe, Wisconsin, P. 417, 1978.
4. Schuett, V.E., and Gurda, R. Treatment Programs for PKU in the U.S.: A Survey. DHEW Publication No. (HSA) 79-5296, 1979.
5. Schuett, V.E., Gurda, R., and Brown, E.S. Diet Discontinuation Policies and Practices of PKU Clinics in the United States. Am. 1. Public Health, 70(50):491-503, May 1980.
6. Schuett, V.E., and Biller, J. The Galactosemia Diet Food List. Waisman Center, Madison, Wisconsin, 1981.
7. Schuett, V.E., and Yandow, J. Low Protein Breads. Waisman Center, Madison, Wisconsin, 1983.
8. Schuett, V.E., and Brown, E.S. Diet Policies of PKU Clinics in the United States. Am. J. Public Health. 74(5):501, 1984.
9. Michals, K., Matalon, R., Dominik, M., Schuett, V. and Brown, E. Difficulties Returning to Diet Therapy in Patients with Phenylketonuria. Pediatr. Res. 18:98A, 1984.
10. Hoganson, G., Berlow, S., Kaufman, S., Milstien, S., Schuett, V., Matalon, R., Naylor, E., and Seifert, W., Biopterin Synthesis Defects: Problems in Diagnosis. Pediatrics, 74(6):1004, 1984.
11. Schuett, V.E., Brown, E.S., and Michals, K. Reinstitution of Diet Therapy in PKU Patients from Twenty-two U.S. Clinics. Am. J. Public Health, 75:39, 1985.
12. Michals, K., Dominik, M., Schuett, V., Brown, E., and Matalon, R. Difficulties in Returning to Diet Therapy in Patients with Phenylketonuria: Implications for Child Bearing. J. Ped.,106:933, 1985.
13. Barden, H.S., Kessel, R., and Schuett, V. The Costs and Benefits of Screening for PKU in Wisconsin, Social Biology. 31(1-2):1, 1985.
14. Berlow, S., and Schuett, V. The Hyperphenylalaninemias, Current Pediatric Therapy 12, Gellis, S. and Kogan, B., eds., W.B. Saunders, Philadelphia, P. 338, 1986.
15. Schuett, V., Yandow, J., and Pringle, D. Screening and Treatment of PKU (42 minute slide-tape). Health Sciences Consortium, Carrboro, North Carolina, 1986.
16. Schuett, V. Inborn Errors of Metabolism in the United States: An Overview. Top. Clin. Nutr. 2(3):I-8, 1987.
17. Henderson, R., Schuett, V., Castiglioni, L., Trahms, C., and Koch, R. PKU and the Schools: Information for Teachers, Administrators and Other School Personnel, DHHS Publication No. (HSA) 88-xxx, 1988.
18. Schuett, V. Low Protein Cookery for PKU (second edition), Madison,Wisconsin: University of Wisconsin Press, 569 pages, 1988.
19. Schuett, V.E., Treatment Programs for PKU and Selected Other Inherited Metabolic Diseases in the United States. DHEW Publication No. (HRSA) 89-5296, 1989.
20. McBurnie, M., Kronmal, R, Schuett, V. E., Koch, R., Azen, C., Physical growth of children treated for phenylketonuria. Annals of Human Biology, vol. 18, 357-68, 1991.
21. Schuett, V. E. Low Protein Bread Machine Baking for PKU, Plaid Printing for National PKU News, 1993.
22. Schuett, V. E. The Low Protein Food List for PKU, Hemlock Printers, Ltd. for National PKU News, 1995 and 2002.
23. Schuett, V. E., editor, National PKU News, 16 page publication, 1989 to present.
24. Schuett, V.E., and Taylor, M.E., You and PKU, second edition, National PKU News, 1998.
25. Schuett, V., and Corry, D., Apples to Zucchini: A Collection of Favorite Low Protein Recipes, Delta Printing for National PKU News, 2005.