Phenylketonuria (known as PKU), an inherited brain-threatening metabolic disease where there is an increased level of a substance called phenylalanine (Phe) in the blood. Phe is a building block of protein and is found in most foods. This is important because the damage caused by toxic levels of Phe in the first few years of life is irreversible. Children and adults with PKU can typically eat no more than 6 grams of protein a day.

The National PKU Alliance (NPKUA) was formed 15 years ago to fight for a better quality of life for those living with PKU and to fund research for possible treatments. At that time of the NPKUA’s formation, there was little to no ongoing research. There were no therapies in development or any viable pathways for a cure in our children’s lifetime. Today, there are two FDA approved therapies on the market, but not all people with PKU can benefit from these therapies. Today’s therapies and ground-breaking research are a direct result of philanthropic donations during the past 15 years. Because PKU is a very rare disease, it is considered an orphan disease and the burden of funding therapies and, ultimately, a cure falls on those PKU families and their generous network of friends, relatives, neighbors, and colleagues. In the last 15 years, we have just scratched the surface in the science and innovation arenas. With your help, our fundraising efforts will usher in a new generation of therapies and ultimately a cure.

Our Chicago Lifting the Limits Gala event will include cocktails and silent auction, a seated dinner and dessert, and a Live Auction and Dancing. Our Emcee is Scott Pelley, award-winning journalist, and 60 Minutes correspondent. Funds will be used to support research geared at improving the lives of people with PKU.