National PKU News
www.pkunews.org

For Students Writing Papers

Since the National PKU News Web site was started in January 1996, I have received many inquiries via e-mail from students writing papers on PKU. Though I am always happy for interest in PKU, I am sorry to say I unable to respond to your questions (unless you have a connection to PKU through a diagnosed family member). National PKU News has more than 2000 subscribers; since I am the sole employee of the organization, responding to their questions and needs has to be my first priority.

 If you need information about PKU:

• The What is Phenylketonuria? web site has an outstanding segment on PKU, with animated graphics and video clips describing all aspects of PKU from genetics to screening to treatment. It is from the Dolan DNA Learning Center and the PKU segment is part of their Your Genes, Your Health series.
• I regret to say that National PKU News has no literature of any kind to give away for student use; however, you may use the order forms on this Web site to purchase back issues of the newsletter or other publications offered by National PKU News such as the low-protein food list or cookbooks.
• Check out all of the information at this Web site.
• The Technical Description of PKU site gives a very erudite treatise heavily focused on molecular genetic aspects. It contains a large number of references. The site at McGill University in Canada contains excellent basic information in more easily understandable language.
• There are many other scientific papers on a huge array of specific topics, which you can find through doing a Medline or other search of the medical literature looking for specific PKU-related topics.
• You can also purchase a limited number of articles for lay persons and from the scientific literature from Children’s PKU Network: 1520 State St. Suite 240, San Diego, CA 92101 (tel: 619-233-3202).
• Another complete reference on PKU (and other metabolic diseases) is a book, The Metabolic and Molecular Basis of Inherited Disease, (7th edition is the latest, with 3 volumes by Scriver, Beaudet, Sly and Valle). This is available in medical libraries. It contains a very detailed and quite technical description of PKU. (Earlier editions just have the title The Metabolic Basis of Inherited Disease, by Stanbury, et. al.) There are many references cited.
• If you need good, basic non-technical information about PKU, written at the level of a lay person, a publication called "Living with PKU" (designed for parents) could be helpful. This booklet is published by Mead Johnson Nutritionals. You can contact a local Mead Johnson representative to obtain a copy. (I cannot guarantee they will be willing to give one to a student, however.)

Good luck with your paper or project on PKU!