What is the Maryland Alliance of PKU Families (MAPKUF)?

The Maryland Alliance of PKU Families, Inc. (MAPKUF) exists to support Maryland children, teens and adults and their families whose lives are affected by the genetic disease Phenylketonuria, or PKU.

What is PKU?

Every child born in Maryland gets a PKU blood test soon after birth. Each patient with PKU had this test come back positive for the disorder - and there's just a 1 in ~18,000 chance of this. A person with PKU genetically inherits the disorder from their parents, who generally don't know that they are carriers of the PKU gene.

The PKU disorder causes improper metabolism of an essential amino acid found in natural forms of protein in foods. People with PKU cannot properly digest this amino acid, and the incomplete metabolism results in a build-up of a dangerous neuro-toxin in the blood.As a result, babies born with PKU risk severe mental and physical handicap if proper treatment for the disorder doesn't begin very soon after birth. Fortunately, the PKU blood tests identifies almost all babies born with the disorder so that proper treatment can be promptly provided. Treatment for PKU consists of a very strict diet that eliminates virtually all foods that are high in protein.

How does the PKU Diet Work?

The PKU treatment eliminates all meat, fish, dairy products, nuts, eggs, many grain products and some vegetables from the diet. Basically, all foods that are high in protein are off-limits for people with PKU. In order to get all of the nutrients and other amino acids that are necessary for a proper diet, people with PKU have to take a special formula that's usually in the form of a liquid beverage. The PKU diet also incorporates a lot of fruits, vegetables and naturally low-protein foods, as well as manufactured foods that are specially low in protein (such as pastas, cookies and breads). In order to avoid adverse health effects, people with PKU need to follow this special diet for their whole lives.

The formula and manufactured foods for treatment on the PKU diet can be very expensive. Typical diet treatment cost estimates are in the range of $5000 to $7000 (or more) per year to treat one PKU person. Because of the genetic nature of the disorder, some families have more than one member with PKU.

What does the MAPKUF do?

MAPKUF helps families that have been affected by the genetic disorder PKU. We provide information, diet assistance, and guidance to families with newly diagnosed babies. We also help families with diet emergencies such as formula shortages. People with PKU eat very differently than others, and it can be very painful to be seen as "different". For children and teens, especially, this difference can lead to feelings of alienation and problems with social interaction in life.

So, most of all, the goal of the MAPKUF is to help children with PKU feel more "normal". To do this, we bring PKU children together with other PKU children to give them an environment where everyone follows the same diet and deals with the same issues. They get to play and have a good time without worrying about their diets, for a change. We do this at an annual Spring picnic, a 4 day Summer camp, Camp Huber, and a Fall harvest outing.

Please Support the MAPKUF!

The MAPKUF is a non-profit organization dedicated to supporting people with the genetic disorder PKU. We rely on your donations to fund our many events and services that support PKU families. Please visit our Donations page and donate to our cause today!