FPWR ANNUAL CONFERENCE SESSIONS AND BIOS

Standards of Care for Children Ages 0-2

Standards of Care for Children Ages 3-9

Standards of Care for Teenagers and Adults with PWS

Presented by Dr. Diane Stafford

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.  Following Dr. Stafford's presentation,  Dr. Lauren Schwartz will share take-home tips for caregiver self-care.

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. 

Presentations and Management of Sleep Disorders in Prader Willi Syndrome

Want to learn more about sleep and Prader Willi Syndrome? In this talk, Dr. Jessica Duis, an Associate Professor of Pediatrics and Genetics at Children’s Hospital Colorado, University of Colorado, will highlight presentations of sleep disorders in PWS, diagnostic evaluation and treatment considerations. There will be a focus on how sleep disorders may masquerade as other manifestations of PWS.

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 and Dr. Deepan Singh will discuss anxiety and how it can be treated. Following the panel discussion, there will be small roundtable discussions.

Therapeutic Challenges and Solutions- Age 0-2

Occupational, Physical and Speech Therapy early intervention are so important for your child with PWS.  Join our expert panel to learn more about the challenges children face and therapeutic solutions to support them.  Hear from Sydney Martin- Occupational Therapist, Kelsey Miller-Physical Therapist, and Laura Cooper- Speech-Language Pathologist- all on Dr. Duis' multidisciplinary team at Children's Hospital Colorado.  Following the panel presentations, there will be a small round table discussion.  

You also won't want to miss a reflection of the conference following roundtables.

Early School Years- Age 3-8

Early School Years is an important time in your child's life.  Join our expert panel to learn how to set up your child for success.  Dr. Anastasia Dimitropoulos will discuss social strategies based on her PRETEND study, Staci Zimmerman will give you tips on setting up your child's IEP, and Cindy Szapacs will discuss behavior in the early school years.  Following the panel discussion there will be small roundtable discussions.  

You also won't want to miss a reflection of the conference following roundtables.

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.

Laura Cooper, M.S., CCC-SLP

Speech-Language Pathologist

Laura E. M. Cooper, M.S., CCC-SLP is a speech-language pathologist with 12 years of clinical and leadership experience with a demonstrated passion of providing evidence-based, family and patient-centered care and believes that provider and family collaboration is the key to helping a child reach their full potential. Laura specializes in evaluation and treatment of children with autism spectrum disorder and as an Early Start Denver Model (ESDM) certified clinician, she currently serves as the Autism Program Coordinator for the speech-language therapy department at Children’s Hospital Colorado, one of the top children’s hospitals in the nation. With a strong belief in the multidisciplinary approach to supporting patients and families, she also serves as the lead speech language pathologists within the Prader Willi Syndrome multidisciplinary clinic at Children’s Hospital Colorado. Prior to joining the team at Children’s Hospital Colorado, she was an SLP and therapy supervisor at Blank Children’s Hospital in Des Moines, IA. With a Master of Science in Speech Language Pathology from the University of Nebraska- Lincoln, her other clinical interests include implementing and supporting families with Augmentative and Alternative Communication (AAC) and fostering relationships with patients and families through caregiver coaching.

Anastasia Dimitropoulos, Ph.D.

Professor Department of Psychological Sciences at Case Western Reserve University

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.

Jessica Duis, M.D.

Associate Professor of Pediatrics and Genetics at Children’s Hospital Colorado, University of Colorado

Dr. Jessica Duis is an Associate Professor of Pediatrics and Genetics at Children’s Hospital Colorado, University of Colorado. She did her medical training at Johns Hopkins School of Medicine in Baltimore, MD. She completed a post-doctoral fellowship in the Johns Hopkins Department of Psychiatry and Behavioral Sciences. She is a board-certified pediatrician and medical geneticist who practices in the area of genetics and complex/special care pediatrics and primarily performs diagnostic work up and management for individuals with rare disorders focused on neurogenetic conditions and rare genetic causes of obesity and metabolic conditions. She has focused her career on chromosome 15 disorders including Angelman Syndrome, Duplication 15q, and Prader-Willi syndrome. She has founded and built Centers of Excellence for Angelman, Prader-Willi, duplication 15q, and Pitt Hopkins Syndromes. Dr. Duis’ career has spanned translational, clinical and bench research. She is passionate about establishing standards of care, developing objective and sensitive outcome measures and improving clinical trial design for individuals with neurodevelopmental disorders to improve quality of life and equity of care.

Sydney Martin, MS OTR/L, BCP

Occupational Therapist, Children’s Hospital Colorado

Sydney Martin is an occupational therapist who has practiced for 30 years. Her expertise is with genetic disorders, sensory processing and she has been a member of the Prader Willi Clinic at the Children's Hospital Colorado since it began. 

Kelsey Miller, PT, DPT

Certified Pediatric Clinical Specialist, Children’s Hospital Colorado

Kelsey Miller, PT, DPT is a certified pediatric clinical specialist at Children’s Hospital Colorado (CHCO) where she specializes in treating children of all ages with both neurodevelopmental and orthopedic diagnoses. Kelsey received her doctorate of physical therapy from the University of Colorado in 2014. Following completion of this degree, Kelsey participated in a pediatric residency program at the University of Colorado during which she completed a LEND fellowship and worked in Early Intervention, a school district, and hospital-based outpatient and inpatient settings. At CHCO, Kelsey serves as the Site Coordinator for Clinical Education and is a member of the CHCO Prader-Willi Multidisciplinary Clinic, the CHCO Rett Clinic, Developmental Pediatrics Infant and Toddler Clinic, and in the Sie Center for Down Syndrome. She also works as associate faculty at the University of Colorado to support pediatric content in the Doctor of Physical Therapy Program. 

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.

Cindy Szapacs, BCBA, M.Ed.

Board-Certified Behavior Analyst

Cindy Szapacs is a Board-Certified Behavior Analyst who has a Master’s Degree in Education from the University of Virginia. She has been working in the field of special education, mostly using applied behavior analysis, for many years. She has worked both as a direct service provider to individuals with a variety of diagnoses between the ages of 1 and 21 as well as a consultant providing individual, small group and large group trainings to families and professionals.  Currently, Cindy works as a Behavior Analyst, supporting classrooms run by the Bucks County Intermediate Unit #22 in Pennsylvania. She also is a mother of two boys, one of whom happens to have PWS. Since joining the PWS family, she has learned a lot about this unique population and has made a point of educating herself, professionals and parents on how to best meet the needs of those with PWS. 

Staci Zimmerman, M.Ed

IEP Consultant

Staci Zimmerman has over 20 years of experience in special education, teaching and consulting in various school districts in CO.  She supports private clients, and contracts with The Prader-Willi Syndrome Association of Colorado (PWSACO), Angelman Syndrome Foundation, and Rocky Mountain Down Syndrome Association (RMDSA), as an IEP Consultant. Staci collaborates with the PWS Multi-Disciplinary Clinic at the Children’s Hospital CO, supporting patients, families, providers, and school districts in Colorado.  Staci is an Adjunct Professor, in the Office of Clinical Experiences and Partnerships, School of Education, at Metropolitan State University of Denver.  She teaches undergraduate Special Education, and supervises student teachers in various school districts in CO.  Staci attended The University of Kansas, with a B.A in sociology and a Master's in Special Education.  She continued post graduate work at The University of Kansas Medical Center in Autism Spectrum Disorder. 

Joanna Wrede, MD, FAASM

Clinical Associate professor of Pediatrics and Neurology at Seattle Children’s Hospital, University of Washington.

Dr. Joanna Wrede is a pediatric sleep neurologist at Seattle Children's Hospital, and Clinical Associate Professor of Pediatrics and Neurology at the University of Washington (UW) School of Medicine in Seattle, Washington. She received her medical degree at Stanford University, with Pediatric Neurology and Sleep fellowship training through UW. 

Dr. Wrede’s overarching interests involve the intersection between sleep and neurology. Her focus includes sleep disorders in neurogenetic conditions including Prader-Willi syndrome and Schaaf-Yang syndrome. She is a member of the interdisciplinary Prader-Willi Syndrome clinic, the Tuberous Sclerosis Complex program, the Center of Excellence in Mitochondrial Medicine, and a specialty Sleep-Neurology clinic at Seattle Children’s Hospital. She has spoken at national PWS meetings and internationally on the topic of sleep in special syndromic conditions.