University Health Care Announces New Organization Supporting PKU Patients

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Oct 2, 2008 10:05 AM

With support from University Health Care and the Department of Pediatrics at the University of Utah, a group of parents, professionals, and individuals have come together to form the Intermountain Phenylketonuria and Allied Disorders Association (IPAD), a Utah non-profit corporation. IPAD is the first organization dedicated to providing support and services to individuals and families with Phenylketonuria and allied disorders in the Intermountain West. IPAD’s mission is to provide education and resources to individuals and families, to encourage research, and to increase public awareness of these conditions. 

Phenylketonuria, also know as PKU, is an inherited metabolic disorder that prohibits the body from properly processing the amino acid phenylalanine. Children born with the disorder are diagnosed through state newborn screening programs, which test all children born in the United States for PKU and many other disorders. PKU affects approximately 1 in 10,000 children and there is no cure. The treatment consists of a severely restricted diet that is low in protein (phenylalanine) and must be followed for life. Without treatment, PKU causes many neurological problems, including mental retardation.

Allied disorders, as they are commonly known, include homocystinuria, maple syrup urine disease, organic acidemias, tyrosinemia, urea cycle disorders, and a host of other inborn metabolic errors. Each of these allied disorders is similar to PKU and require adherence to a restricted diet for life.

The first meeting of IPAD will be Tuesday, Oct. 14 at 7 p.m. in the auditorium at Primary Children’s Medical Center. IPAD welcomes support and participation from anyone interested in, or affected by, PKU and allied disorders.

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