FPWR Annual PWS Family Conference

Amanda Griffith-Atkins is a licensed therapist and founder of the Amanda Atkins Counseling Group in Chicago. Amanda earned a Master's degree in Marriage and Family Therapy from Northwestern University, but it wasn't until her son Asher was born that she discovered her life's purpose: to help parents of disabled children find their stride. Amanda has become a leading expert in helping parents of disabled children navigate their emotions, relationships, and parenting. Her first book. How to Handle More Than You Can Handle: Caring for Yourself While Raising a Disabled Child, came out in June, 2025. She lives in Chicago with her husband and 3 sons.

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 PWSAUSA 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.

Anastasia Dimitropoulos is a Professor in the Department of Psychological Sciences at Case Western Reserve University (CWRU). She received her doctorate in psychology from Vanderbilt University and completed a postdoctoral fellowship at the Yale University Child Study Center. Dr. Dimitropoulos has been engaged in research on Prader-Willi syndrome for over twenty-five years. Her research currently focuses on building and evaluating a play-based remote intervention program to optimize development in children with PWS known as the PRETEND (Play-based Remote Enrichment To ENhance Development) program. She is also the lead investigator for the Cleveland team on the KidsFirst Autism Registry, a partnership between the Hartwell Foundation, Stanford University, University of California Davis, and CWRU, whose goal is to identify shared sub-classifications of behavior among individuals with autism to better inform intervention. Additionally, Dr. Dimitropoulos is the Director of the Schubert Center for Child Studies at CWRU, where she utilizes her expertise in child development to lead the center in its mission to bridge research, policy, practice, and education to improve the well-being of all children and adolescents.

Dr. Destiny Pacha is a PWS Education Specialist. As the founder and president of Empowered Education Solutions, she supports families and children with PWS across the country in developing appropriate education plans based on each child’s individual needs. In addition, Dr. Pacha collaborates with school districts to provide educational training to school staff and has developed numerous PWS teaching resources for parents, educators, and other school personnel. She attended the University of Central Florida and earned three degrees in education, including a Bachelor’s Degree in Elementary Education, a Master's Degree in Educational Leadership, and an Education Doctorate in Special Education. She recently published the first and only children’s book about PWS—It Starts With Hello: Katie’s Story About Prader-Willi Syndrome. Her passion is in fostering meaningful, inclusive opportunities in school for children with PWS in a food-secure environment where their educational, behavioral, and health-related needs can be met.

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.

Dr. Sani Roy is a pediatric endocrinologist who has been caring for children and families at Cook Children’s Medical Center since 2016. She completed her pediatric endocrinology fellowship at The Children’s Hospital of Philadelphia, where she published extensively on childhood growth and obesity. In 2022, Dr. Roy was honored with an endowed chair for Prader-Willi syndrome (PWS) at Cook Children’s. She serves as Director of the Multidisciplinary Prader-Willi Wellness, Education, and Research Center (MPoWER), where she is deeply committed to improving care, education, and support for children and families affected by PWS. Dr. Roy has published key clinical studies on PWS, including work focused on feeding tube use and swallow dysfunction in infants with PWS. She is actively involved in several national collaborations and serves on the Executive Committee of the PWS Clinical Investigator Collaborative. Above all, Dr. Roy values connecting with her patients and empowering families through knowledge and compassionate care. When she’s not working, she loves spending time with her husband, their two boys, and their very large golden doodle.

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.

Dr. Diane Stafford is a Clinical Professor of Pediatrics at Stanford University school of Medicine in the Division of Pediatric Endocrinology. She has been caring for patients with PWS for over 20 years both at Stanford and previously at Boston Children’s Hospital, with a particular interest in variations in puberty seen in this group. She is the Chair of the newly formed PWS-CLIC (Clinical Investigation Collaborative) working with FPWR to improve the care of those with PWS through collaborative investigation and research.

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.