In this conversation, Dr. Kasey Bedard discusses Prader-Willi Syndrome (PWS), focusing on its genetic basis, symptoms, and the importance of early intervention. She emphasizes the significance of dietary management, particularly in addressing hyperphagia, and explores behavioral challenges such as skin picking and emotional regulation. Dr. Bedard highlights the role of parent training programs and community support in managing PWS and the need for collaboration among medical providers. The discussion also touches on residential care strategies and the future of research and treatment for individuals with PWS.

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Contact:

Dr. Kasey Bedard

[email protected]

https://www.pwseducation.org/

Links:

Prader-Willi Association of America

https://www.pwsausa.org/

Jennifer Miller - Pediatric Endocrinologist specializing in hyperphagia

Mike Tan - Pediatric Dietitian

Foundation for Prader Willi Research

https://www.fpwr.org/

Articles Referenced:

Bedard, K. E., Griffith, A. K., Ulm, D., Strittman, M., Krukowski, K., Eaton, A., Rone, A., & Cardon, T. (2025). Evaluating the Impact of PWS Smart-Start: A Behavior Analytic Caregiver Training Program for Prader-Willi Syndrome. Journal of Positive Behavior Interventions, 27(1), 26-38. https://doi.org/10.1177/10983007231200535

Bedard, K.E., Griffith, A.K. & Krukowski, K. Caregiver-Implemented Behavior Analytic Treatment Package for Skin Picking in PWS: A Pilot Study. Adv Neurodev Disord (2024). https://doi.org/10.1007/s41252-024-00393-2

Bedard, K.E., Pacha, D., Griffith, A.K., & Ward, S. (2024). Prader-Willi Syndrome: A primer for school psychologists,

Bedard, K.E., Griffith, A.K., Lister, M.A. et al. Behavioral and Dietary Management for Adults with Prader–Willi Syndrome in a Residential Setting. Adv Neurodev Disord 5, 93–101 (2021). https://doi.org/10.1007/s41252-020-00185-4

Behaviour Speak Podcast Episodes On Other Genetic Syndromes

Episode 6 Behavior Analysis and Down Syndrome with Nicole Neil

https://www.behaviourspeak.com/e/episode-6-down-syndrome-and-behaviour-analysis-with-dr-nicole-neil-phd-bcba-d/

Episode 27 Val Saini shares some of his research on DiGeorge Syndrome

https://www.behaviourspeak.com/e/episode-27-translational-research-digeorge-syndrome-and-a-little-dash-of-metacontingencies-with-valdeep-saini-phd-bcba-d/

Episode 39 Behavior Therapy for Tics and Tourette Syndrome with Douglas Woods

https://www.behaviourspeak.com/e/episode-39-behaviour-therapy-for-tics-and-tourette-syndrome-with-douglas-woods-phd/ 

Episode 137 Behavior Analysis and Fragile X Syndrome with Katerina Monlux

https://www.behaviourspeak.com/e/episode-137-fragile-x-syndrome-with-dr-katerina-monlux/