FPWR Family Conference Sessions 2022

	Standards of Care- All Ages 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 across the age continuum including medical needs, currently available medications, supplements, and behavior management. Watch the recorded session >>
	ABA & PWS: Common Practices and Tips for Home Applied Behavior Analysis (ABA) is the scientific approach to studying and understanding behavior. Its purpose is to decrease unwanted behavior and increase behaviors that help people thrive. In this session, Tony Chambers will present foundational information of ABA and how to re-think how you observe your child's behavior. He will also cover common practices, where it all intersects with PWS, and give some behavior tips to use at home. Watch the recorded session >>
	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! Watch the recorded session >>
	WORKSHOP: Behavior and Mental Health in PWS: Expert Panel and Roundtable Discussion 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. Elizabeth Roof will discuss behavior strategies you can implement in your home, Dr. Lauren Schwartz will explain how we can effectively assess and manage mental health issues in our loved ones, and Dr. Deepan Singh will discuss anxiety and how it can be treated. Following the panel discussion, there will be small roundtable discussions.
	WORKSHOP: Orthopedic Challenges in PWS and Therapeutic Solutions Part 1: Orthopedic Challenges in PWS Dr. van Bosse will discuss orthopaedic issues that children with PWS might experience. These may include problems related to hypotonia and developmental delay, such as severe flat feet and delayed walking. Other conditions that potentially can have more far-reaching consequences are hip dysplasia (10%) and scoliosis (40-70%). During this session, we will briefly discuss some basic information about PWS, then focus on the orthopaedic topics, with an emphasis on scoliosis, its diagnosis, and different forms of treatment. The presentation is illustrated with cases of the presenter’s own practice. Watch the recorded session >> Part 2: Treating Orthopedic Impairments in PWS Patients with PWS present with varying levels of physical characteristics including low muscle tone, neuromuscular weakness and developmental delays. These often contribute to musculoskeletal consequences and orthopedic impairments, including scoliosis. Dr. Wagner’s lecture will review therapeutic approaches with an emphasis on how breathing, postural control and positioning techniques can enhance current therapeutic approaches to slow the progression or prevent these musculoskeletal consequences. Watch the recorded session >>
	Research Round-Up: 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. Watch the recorded session >>
	Feeding Techniques for Children Ages 0-2 Learn how to develop and advance your child’s oral motor feeding skills using video swallow studies, oral motor development, feeding development, and special dietary needs. Finding You. Thriving as a Disability Parent It is an understatement to say that parenting someone with PWS impacts our marriages, personal life, and career. In this session, attendees will hear from fellow PWS-parent and licensed marriage and family therapist Amanda Griffith-Atkins, who will share her experiences and guide you through discussing and processing the hard stuff. We will explore coping skills and self-care and take time to connect with parents who get it. You can share openly or reflect quietly. All are welcome.

	PWS Clinical Trials Panel Stay up to date and learn the latest opportunities in PWS clinical trials directly from trial representatives. Time will be reserved for Q&A. Watch the recorded session >>