FPWR ANNUAL CONFERENCE SESSIONS AND BIOS

Standards of Care for Children Ages 0-9

Standards of Care for Teenagers and Adults with PWS

Dr. Diane Stafford is a Pediatric Endocrinologist at Stanford University School of Medicine, who sees hundreds of patients with PWS. In this session, she provides an overview of care for people with PWS over age 10 including medical needs, currently available medications, supplements, labs, and sex hormones.  

Research Roundup: Highlights from FPWR's Research Symposium

Dr. Theresa Strong presents a digestible summary of the research shared at FPWR’s Annual Research Symposium. Learn how today’s PWS researchers are impacting our understanding of the complexities of PWS and working towards treatments for the many challenges our loved ones face. 

What's Happening in Research?

Dr. Theresa Strong and the FPWR Research Team share highlights of our FPWR research initiatives. Learn more about what is happening in PWS research and what you can be excited about!

Behavior and Mental Health- Age 5 and up

Behavior and mental health issues are prevalent in people with PWS. Join our expert panel to learn what you can do to support your loved one. Patrice Carroll and Elizabeth Roof will discuss behavior strategies you can implement in your home, Dr. Lauren Schwartz will discuss mental health, and Dr. Deepan Singh will discuss anxiety and how it can be treated. Following the panel discussion, there will be small roundtable discussions.

Growing Up with a Sibling with PWS

Explore the profound impact of growing up with someone diagnosed with PWS in this session, featuring results from a recent FPWR study. For this study one-on-one interviews were conducted with siblings to gain an in-depth understanding of their experiences including potential impacts on their coping, eating habits, emotional and physical well-being, and strategies that have been helpful for their coping.  We will discuss how growing up in these special families has shaped their educational and career paths as well as resources and other tools to support and celebrate siblings of people with PWS.  *SYS families welcome

Educational Implications of PWS for Youth Ages 3-22

Dr. Destiny Pacha is a PWS Education Specialist and president of EmpowerED Solutions. In this session, she provides an overview of the educational implications of PWS and the Individuals with Disabilities Education Act (IDEA). She will also discuss appropriate accommodations, specialized and related services, and learning strategies to meet your loved one’s unique educational needs.

Patrice Carroll

Director of PWS Services Latham

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.

Destiny Pacha, Ed.D.

President, EmpowerED Solutions

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

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.  

Parisa Salehi, M.D.

Clinical Director of SCH PWS Clinic

Dr. Parisa Salehi received her medical degree from the University of Nevada School of Medicine in 2007. Her pediatric and pediatric endocrine training were at Children’s Hospital Orange County, Orange, CA, and Children’s Hospital Los Angeles, LA, CA, respectively. She joined the faculty at Seattle Children’s Division of Endocrinology in 2013 and has been the clinical director of the SCH PWS Clinic since its inception in 2014.

Christian Schaaf, M.D.

Medical director and Department Chair of the Institute of Human Genetics at the University of Heidelberg (Germany)

Christian is the medical director and department chair of the Institute of Human Genetics at the University of Heidelberg (Germany). He is also a visiting professor at the Baylor College of Medicine (Houston, USA). He studies the genetic causes of neurodevelopmental and neuropsychiatric disorders. His work led to the discovery of multiple new disease genes, and three disorders have been named after him: Schaaf-Yang syndrome, Bosch-Boonstra-Schaaf Optic Atrophy syndrome, and Marbach-Schaaf syndrome. 

Christian’s groundbreaking work has been recognized with many awards, including the William K. Bowes Award for Medical Genetics by Partners Healthcare and Harvard Medical School and the inaugural Seldin-Smith Award for Pioneering Research by the American Society for Clinical Investigation. He has authored four books, including a major textbook of medical genetics that has been translated into several languages.

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.

Deepan Singh, M.D.

Child, Adolescent & Adult Psychiatrist

Dr. Deepan Singh is a board-certified child, adolescent, and adult psychiatrist, who currently serves as the Vice-Chair of Ambulatory Psychiatry Services at Maimonides Medical Center in Brooklyn, NY. 

Dr. Singh received his medical education at Sikkim Manipal Institute of Medical Sciences in India following which he did his residency training in Psychiatry at SUNY Downstate Medical Center in Brooklyn. He then received sub-specialty training in child & adolescent psychiatry at Zucker Hillside Hospital in Queens. In addition, he has received training in psychodynamic psychotherapy at the Institute for Psychoanalytic Education affiliated with NYU. During his years in practice, Dr. Singh has had the opportunity of gaining expertise in a wide variety of treatment modalities applied to all ages and across the disease spectrum. Prior to joining Maimonides, Dr. Singh served as the Founding Associate Dean of Students & Diversity for the NYU Long Island School of Medicine, a primary-care-focused free tuition medical school. 

Over the past eight years, Dr. Singh has developed a strong interest and expertise in the management of Prader-Willi Syndrome. He has numerous peer-reviewed publications and presentations on the behavioral aspects of PWS. He remains active clinically and in clinical research. He serves on the scientific review boards for Prader-Willi Syndrome Association (USA) and the Foundation for Prader-Willi Research. He is also part of the International Prader Willi Syndrome Organisation's Mental Health Network. Dr. Singh's most recent work is his book "Neuro-behavioral Manifestations of Prader-Willi Syndrome: A Guide for Clinicians and Caregivers" which is an easy-to-read resource for all clinicians and caregivers taking care of persons with PWS

Diane Stafford, M.D.

Clinical Professor of Pediatrics

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 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.