What is the National PKU News Organization?
By Virginia Schuett, MS, RD, Director and Editor
6869 Woodlawn Ave. NE #116
Seattle, WA 98115-5469
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
National PKU News now has over 2000 subscribers who receive the organizationís
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
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, Seattle, WA; and
Dorothy Corry, PKU parent of a young adult, from Seattle, WA.
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 ó- 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
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
Schuett, V.E. Low Protein Cookery for Phenylketonuria., first edition,
Madison, Wisconsin. University of Wisconsin Press, 374 pages, 1977.
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).
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,
Schuett, V.E., and Gurda, R. Treatment Programs for PKU in the U.S.: A Survey.
DHEW Publication No. (HSA) 79-5296, 1979.
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.
Schuett, V.E., and Biller, J. The Galactosemia Diet Food List. Waisman
Center, Madison, Wisconsin, 1981.
Schuett, V.E., and Yandow, J. Low Protein Breads. Waisman Center,
Madison, Wisconsin, 1983.
Schuett, V.E., and Brown, E.S. Diet Policies of PKU Clinics in the United States.
Am. J. Public Health. 74(5):501, 1984.
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.
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.
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,
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.
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.
Berlow, S., and Schuett, V. The Hyperphenylalaninemias, Current
Pediatric Therapy 12, Gellis, S. and Kogan, B., eds., W.B. Saunders,
Philadelphia, P. 338, 1986.
Schuett, V., Yandow, J., and Pringle, D. Screening and Treatment of PKU (42
minute slide-tape). Health Sciences Consortium, Carrboro, North Carolina, 1986.
Schuett, V. Inborn Errors of Metabolism in the United States: An Overview.
Top. Clin. Nutr. 2(3):I-8, 1987.
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.
Schuett, V. Low Protein Cookery for PKU (second edition),
Madison,Wisconsin: University of Wisconsin Press, 569 pages, 1988.
Schuett, V.E., Treatment Programs for PKU and Selected Other Inherited Metabolic
Diseases in the United States. DHEW Publication No. (HRSA) 89-5296,
McBurnie, M., Kronmal, R, Schuett, V. E., Koch, R., Azen, C., Physical growth of
children treated for phenylketonuria. Annals of Human Biology, vol. 18,
Schuett, V. E. Low Protein Bread Machine Baking for PKU, Plaid Printing
for National PKU News, 1993.
Schuett, V. E. The Low Protein Food List for PKU, Hemlock Printers, Ltd.
for National PKU News, 1995 and 2002.
Schuett, V. E., editor, National PKU News, 16 page publication, 1989 to
Schuett, V.E., and Taylor, M.E., You and PKU, second edition, National PKU
Schuett, V., and Corry, D., Apples to Zucchini:
A Collection of Favorite Low Protein Recipes, Delta Printing
for National PKU News, 2005.
Last update: July 2009
National PKU News: www.pkunews.org