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May is National PKU Awareness Month

The Indiana PKU and Allied Disorders Association is raising money to support the research of Dr. Harold Trick at Kansas State University. Using technology developed by Dr. Bryan Hainline at the Indiana University School of Medicine, Dr. Trick is working to develop a form of soy protein that will be virtually phe-free. This would enable food manufacturers to create many varieties of soy-based foods for PKU patients, and because they would be made from a "natural" protein, they could be cooked like other soy products and they would provide other necessary amino acids.

What is PKU?

PKU (phenylketonuria) is an inborn error of metabolism that causes individuals to be unable to process the amino acid phenylalanine properly. Every state in the US requires babies to be tested for PKU shortly after birth. Untreated PKU can lead to severe, permanent mental and physical disabilities, especially if untreated in the first three years after birth. Even after age three, children with PKU can develop neurological problems, although these are generally reversible.

Treatment consists of drinking a special synthetic protein formula every day and carefully measuring all foods, restricting the intake of all sources of protein according to the amount of phenylalanine contained. Almost all foods contain some vegetable or animal protein, so everything must be counted except pure sugars and certain artificial foods. Additionally, some foods are never allowed, such as meat, fish, eggs, nuts, soy, and most dairy products.  

Even treated individuals tend to have developmental delays and nutritional deficiencies, partly because of the difficulty of following the diet strictly. For that reason, one of the goals of research is to develop better ways for individuals with PKU to manage their dietary needs.