A relative newcomer to the PKU community, Sarah led her own web development firm, Abacus Design, for a decade. When her daughter was diagnosed with PKU at birth in 2013, she put her professional skills to work for the PKU community and collaborated with National PKU News to launch HowMuchPhe.org. Backed by graduate work in non-profit management and leadership experience at several New York non-profits, Sarah’s role expanded and she assumed the directorship of National PKU News in April 2015.
Board of Directors
Founding Editor & Director; Member, Board of Directors
Virginia Schuett has been involved with PKU since the early days of newborn screening, beginning her long career in 1972 after receiving her Master’s Degree in Nutrition from the University of California, Davis and a dietetic internship in Madison, Wisconsin. For 16 years she was nutritionist for the PKU clinic in Madison, while also serving as a project nutritionist for the most comprehensive study of PKU ever undertaken, the National Collaborative Study of Children Treated for PKU (a multi-clinic longitudinal study). She left the clinic in 1988 to move to Seattle, Washington and started National PKU News in 1989 in order to produce a much-needed national newsletter. She was the editor for 78 issues of the newsletter over 26 years, a publication that had many subscribers in the US and Canada and also had subscribers from dozens of other countries. She is the author of numerous books, including the “classic” Low Protein Cookery for PKU (3 editions, the first in 1977), 4 editions of the Low Protein Food List for PKU, and Apples to Zucchini: A Collection of Favorite Low Protein Recipes. She is the author or co-author of numerous scientific articles and other education materials related to PKU treatment. In 2012 she received a “PKU Hero” award from the National PKU Alliance in recognition of her many contributions to PKU treatment over the past 4 decades. After stopping the newsletter in February 2015, she is “semi-retired” but continues to oversee the nutritional program for National PKU News.
President, Board of Directors
Jeb is the father of a young child with Classical PKU. He has volunteered his time with National PKU News since 2010 and joined the board in 2012. His primary focus with PKU News has been on long term planning, program strategy, amino acid testing and technology. Jeb is a 16 year veteran of Microsoft Corporation where he leads software engineering teams and specializes in the planning & development of large scale intelligence systems and consumer safety technologies.
Secretary and Treasurer, Board of Directors
Adrian has extensive experience in finance at Starbucks and at his current employer, Microsoft. He brings to the board an expertise in financial management and forecasting. The father of a young child with MSUD, Adrian served as a Staff Sargeant in the U.S. Air Force.
Member, Board of Directors
Laurie E. Bernstein, MS, RD, FADA ,FAND , is an Associate Professor, Department of Pediatrics, and Director of the IMD Nutrition Clinic, Section of Clinical Genetics and Metabolism at the University of Colorado School of Medicine, Denver; and Children’s Hospital Colorado in Aurora, Colorado.
Ms. Bernstein received her undergraduate degree in Clinical Dietetics from State University of New York, Buffalo. She received her master’s degree in Administrative and Clinical Dietetics from New York University in New York.
Ms. Bernstein also has a patent for low-protein bacon which is now distributed by Taste Connections. She is a co-founder of Metabolic University, a training forum for registered dietitians, nurses, genetic counselors, and medical doctors and a founding member of Genetic Metabolic Dietitians International (GMDI). She is the co- editor and contributing author ofNutrition Management of Inherited Metabolic Diseases: Lessons from Metabolic University and co-author of Penny the Penguin Has PKU (English, Norwegian, and Spanish), Setting Up Your Low Protein Kitchen, and Max The Monkey has MCADD. She has developed numerous educational modules on PKU and Galactosemia .