Credits & Acknowledgements

The PKU Toolkit was part of the vision of Susan Waisbren, PhD, for the Transition to Adult Care Project. The idea originated from Robin Schwartz, MA, genetic counselor, during a session of the New England Consortium of Metabolic Programs. 

Project contributors:

Susan Waisbren, PhD - project supervisor
Children's Hospital Boston

Afroditi Veloudaki, MA - compilation, adaptation and writing
Emerson College

Timothy Edgar, PhD - graduate supervisor for Afroditi Veloudaki
Emerson College

Sandra Maltzman, Metabolic Dietician - research, writing, publication and distribution
Applied Nutrition Corp.

Isabel Bailey, MSW - research, writing, compilation
Children's Hospital Boston

Additional materials were adapted from the Massachusetts Initiative for Youth with Disabilities Transition Project, developed under a grant from Maternal and Child Health Bureau and Ready to Work Project (#H01MC00006) and the Leadership Education in Adolescent Health (LEAH) Training Program (#6T71MC00009-10).

Suggestions and editing were performed by Jenny Hewlett, MA, Fran Rohr, MS, RD, Harvey Levy, MD, Elizabeth Gurian, MS, Kimberly Pasley, PsyD, Jennifer Gentile, PsyD, and Vera Anastasoaie, all from Children’s Hospital Boston, and Dixon Yun and Dennis Gotto.

Original site design by Blue Phoenix Media. Site revision by Plaidbathtub.

We would also like to acknowledge Sarah Foster, MA, who posted the questionnaires on the PKUADULT List Serve.  In addition, approximately 30 adults with PKU who participated in the research and contributed to this Toolkit with their insights and experiences and we acknowledge the young people with PKU who provided comments after seeing a draft of the Toolkit and suggested we use their pictures instead of anonymous people, So we did! Thank you Teen Challenge participants from 2007!

This project was supported by the New England Genetics and Newborn Screening Collaborative with funding from the Bureau of Maternal and Child Health (#1U22MC03959).