OCTOBER 3 - 5, 2019

Featured Speakers

Patrice Carroll FPWR Conference
Patrice Carroll
PWS Behavior Specialist
Jessica Duis Headshot square
Jessica Duis
Associate Professor of Pediatrics
Janice Forster
Janice Forster
Developmental Neuropsychiatrist
Stuart Libman
Stuart Libman
ACT Expert and Psychologist
Elizabeth Roof
Elizabeth Roof
Senior Research Specialist
Lauren Schwartz
Lauren Schwartz
Mental Health Programs
Theresa Strong
Director of Research Programs
Harold Van Bosse
Harold Van Bosse
Orthopaedic Surgeon

Conference Speaker Biographies

Patrice Carroll, LCSW
Director PWS Services, Latham Centers

Patrice Carroll is the director of PWS services for both children and adults at Latham Centers in Massachusetts, USA. Patrice received her MSW from Simmons College, Boston, MA 2008. Patrice is the co-chair of the PWSA-USA professional providers board of directors as well as the United States delegate for IPWSO and has over 18 years of experience working with children and adults diagnosed with PWS. Patrice is a co-author of the book Living Healthy with Prader-Willi Syndrome. In addition to her experience with developing person-centered vocational programming for people with PWS, she has specialized in the multi-modal management of skin and rectal picking using intensive, non-contingent, sensory stimulation.

Jessica Duis, M.D.

Dr. Jessica Duis is a geneticist with an unbridled passion for people with PWS. Trained in both pediatrics and genetics at Johns Hopkins Hospital, she also spent a year specializing in epigenetics research, focusing her bench and clinical work on PWS. She hopes to develop a truly translational approach to bringing new treatments to individuals with PWS and has recently authored “A Multidisciplinary Approach to the Clinical Management of Prader–Willi Syndrome" in which she documents comprehensive medical care considerations for individuals with PWS.

Janice Forster, M.D.

Dr. Forster is a Child and Adolescent Psychiatrist in private practice in Pittsburgh, PA who specializes in Developmental Neuropsychiatry. She has had over 25 years of clinical experience in the evaluation and treatment of individuals with developmental disabilities. During the ten years that she served as a psychiatric consultant to an inpatient rehabilitation program, she evaluated over 250 individuals with PWS and has managed the severe manifestations of the disorder across all levels of care. She serves as a consultant for the Prader-Willi Syndrome Association of the USA and the International Prader-Willi Organization. Dr. Forster is co-founder of Pittsburgh Partnership, Specialists in PWS.  She has presented by invitation nationally and internationally on the behavioral phenotype of PWS and psychiatric assessment and management of children and adults with the syndrome. Dr. Forster is featured in a DVD produced by the PWSA which has recorded her presentations for more widespread distribution.

Dr. Forster is a graduate of the University of Pittsburgh School of Medicine (1977), and she completed her combined Pediatric Internship, Child and Adolescent Psychiatry and General Psychiatry residency through the Western Psychiatric Institute and Clinic of the University of Pittsburgh Medical Center (1982). She is a diplomat of the American Board of Psychiatry and Neurology.

Stuart Libman, M.D.

Stuart Libman, MD is a child, adolescent and family psychiatrist and a recognized expert in Acceptance and Commitment Training.

Elisabeth Roof
Senior Research Specialist, Vanderbilt Kennedy Center

Elizabeth Roof is a senior research specialist at the Vanderbilt Kennedy Center. She currently coordinates 5 research programs with children and adults with Prader-Willi syndrome. Her areas of interest are a whole person approach to mental health management and prevention of psychiatric and behavior problems in PWS. Since 1995, she has personally evaluated more than 325 individuals with PWS. She has given feedback on issues such as family and school interventions, medication recommendations, and residential placement. She has given a number of talks/presentations at international/national/local conferences about behavioral interventions and effective parenting.  She has helped write and produce 3 YouTube videos with PWS, FPWR and IPWSO for best practices in PWS. She has worked with families across the country and Canada to help obtain appropriate supervised work and residential services. She has helped develop outcome measures for several drug studies and has run 3 clinical trials in PWS with many more on the horizon. Elizabeth has been licensed by the state of Tennessee as a Health Service Provider in Psychology since 1994. She has received the Kennedy Center Outstanding Service Award for her work with families and children with disabilities. Roof received the VUMC Vivian Thomas Award for Excellence in Clinical Research in 2015.  

Lauren Schwartz, Ph.D.
Behavior and Mental Health Programs, FPWR

Lauren Schwartz, Ph.D. received a B.S. from the University of California, San Diego in Developmental Psychology and a Ph.D. in Clinical Psychology from the University of California, San Diego/San Diego State Joint Doctoral Program.  She did her clinical internship and research fellowship at the University of Washington, Departments of Psychiatry and Rehabilitation Medicine.  She has focused her studies and clinical work in the area of adjustment and recovery from disability.  She has a particular interest in the impact of disability on families and the interaction between family responses to disability and patient physical and psychological functioning.   She is currently on the faculty at the University of Washington School of Medicine in the Department of Rehabilitation Medicine where she does clinical work, teaching and research.   She and her husband Mark, have two children, including a daughter with PWS.  Lauren is one of the founding members of the FPWR and served as President of the FPWR Board of Directors from 2005-2009.

Theresa Strong, Ph.D.
Director of Research Programs, FPWR

Theresa V. Strong, Ph.D., received a B.S. from Rutgers University and a Ph.D. in Medical Genetics from the University of Alabama at Birmingham (UAB).  She performed postdoctoral studies at the University of Michigan in the laboratory of Francis Collins, M.D., Ph.D., studying the molecular basis of cystic fibrosis and Huntington disease. After her postdoc, she returned to the faculty at UAB, where her laboratory focused on developing gene therapy approaches for cancer. She became the Director of UAB’s Vector Production Facility and a Professor in the Department of Medicine.  Theresa is one of the founding members of FPWR and has directed FPWR’s grant program since its inception. In October of 2016, she transitioned to a full time position as Director of Research Programs at FPWR.  She remains an Adjunct Professor in the Department of Genetics at UAB.  She and her husband Jim have four children, including a son with PWS.

Harold van Bosse, M.D.
Orthopaedic Surgeon, Shriners Hospital for Children

Harold J.P. van Bosse, M.D. has been practicing pediatric orthopaedic surgery exclusively since completing his orthopaedic residency at the University of Illinois in Chicago in 1994, and his fellowship at Toronto’s Hospital for Sick Children in 1995.  He joined the staff of the Philadelphia’s Shriners Hospital for Children in 2008, allowing for a more focused practice treating conditions of special interest.  His interest in Prader-Willi syndrome developed from treating a 2 year old child with PWS and severe scoliosis.  Through that patient, Dr. van Bosse was introduced to the community of specialists caring for children with PWS, joining them to round out the comprehensive care of these challenging and rewarding patients. Much of his efforts have been treating the very young child with PWS and spine deformities.  For these children, treatment devoted to the least invasive modalities that will preserve spinal growth and chest development. These include bracing, spinal casting and expandable implants, to avoid a spinal fusion during childhood.


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Registration Details


Standard Conference Pricing

Research Symposium: October 3-4
Standard Registration - $235

Family Conference AND Research Symposium:
 Standard Registration - $584
Parent/Family Rate - $450

Family Conference Only: October 4-5
Standard Registration - $349
Parent/Family Member Rate - $225
Childcare (children 1 year and older) - $225

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Refund Policy: discounted tickets are not refundable. Regular priced tickets may be refunded up to 30 days prior to conference, less a $25 processing fee.



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