The first ever International Conference for Adults and Teens with PKU and Allied Metabolic Disorders took place August 14-17, 2008 in Chicago, IL, USA. The goals of the conference were to provide information to the participants, bring back information to healthcare providers and public health administrators, and engender social support for those living with PKU.
The conference attendees made history, as they were the largest gathering ever of adults and teens with PKU, representing 3 countries and 27 states. Participants came together to learn from each other, offer support for living a healthful life and have fun in Chicago.
The idea for this conference came from Sarah Foster, an adult with PKU. She organized the steering committee, which included Annaliese Martinec, Brian Goetz, Leah Martin, Leo Rosetti and John McKenzie. Her idea was supported by members of the National Metabolic and Genetic Conditions Transition Work Group, directed by Susan Waisbren and Lou Bartoshesky. This Work Group is part of a larger project, the Genetic and Newborn Screening Service Collaboratives, funded by the Maternal and Child Health Bureau. The Metabolism Program at Children’s Hospital Boston served as the Coordinating Center, with help on many of the administrative details coming from my assistant, Vera Anastasoaie.
The complete conference program, downloadable here as a PDF, was designed and produced by Carrie Verville who knew just how to take all the bits and pieces and put them together in such a nice way. The National PKU Alliance was also a great supporter of the conference. Please join this new organization, which may someday include a Division for Teens and Adults.
The conference would not have been a reality without the generosity of many companies who donated money, food, and supplies. Their hard working representatives attended the conference to show participants their products, and provide treats and entertainment.
Research has shown that people with PKU who are successful in maintaining treatment have three elements in place, that we call the Principles of SAM:
Social Support (for maintaining treatment)
Positive Attitudes (about treatment)
Manageability (insurance, time, convenience)
The International Conference for Adults and Teens with PKU and allied metabolic disorders was meant to promote these principles in the lives of people with PKU. Thanks to all those who contributed and most importantly, thanks to the attendees!
– Susan Waisbren, PhD
Children’s Hospital Boston
Director, New England Consortium of Metabolic Programs
Consultant to BioMarin Pharmaceuticals