PKU Organization of IL
The official twitter feed for The PKU Organization of Illinois. A nonprofit organization and resource for local & worldwide families dealing with Phenylketonuria The PKU Organization of Illinois focuses efforts in three main areas: education, support, and research.
PKU families need to understand the importance of sticking to the diet, to cope with issues that the diet raises, and to never feel alone when trying to meet this challenge. We help with these issues in a variety of ways.
The PKU Press (published three times a year) and our website (www.pkuil.org) are forums for the exchange of new information, ideas, recipes, and encouragement. Our directory lists member contact information. Our annual "Family Camp", new parent coffees, "Discovery Days", social events, educational forums, and cooking classes aim to bring families together for friendship, learning, and support. Our annual meeting has captured national attention for the quality of its presentations on PKU research and treatment from prominent researchers in the field. Our legislative committee works with lawmakers to protect the interests of PKU families. Our annual scholarship is awarded to students, with PKU, that plan on or currently attends a college, university or vocational school.
The PKU Organization of Illinois remains committed to supporting research aimed at better understanding PKU and eventually finding a cure. Research initiatives we've supported include the Maternal PKU Project, gene therapy, and ongoing clinical trials for a "PKU drug" in development called tetrahydrobiopterin (BH4). We are always on the lookout for promising research that needs funding.