Save the Date for FPWR’s 2026 PWS Family Conference & Workshops

Mark your calendars and join us October 9–10, 2026, as parents, caregivers, and medical professionals from across the country gather in Philadelphia, Pennsylvania for FPWR’s 2026 PWS Family Conference — a two-day event designed to connect, learn, and be inspired.

This year’s conference will be extra special, featuring interactive workshops, small-group discussions, and hands-on learning experiences that help families share their stories, build connections, and learn from one another.

A Conference That Connects, Engages, and Empowers

This year’s program is built around community, connection, and collaboration. Here’s a preview of a few highlighted sessions to look forward to:

• Endocrine Issues and Recommendations

  Caring for a person with PWS can be complex, but one specialist is consistently a part of the care team—the endocrinologist. This session, offered three times for specific age groups (infants & toddlers, children, and teens & adults), covers essential endocrine care, including medications, supplements, labs, and medical management tips to support individuals with PWS at every stage.

• What's Happening in Research?

  Join Dr. Theresa Strong and the FPWR Research Team as they share the latest updates from FPWR’s research initiatives. Get an inside look at current studies, promising new therapies, and the exciting progress being made in PWS research. Learn how this work is shaping care and treatment, and why there’s so much reason for optimism across the PWS community.

• Advancing Treatments for PWS

  Curious about how treatments for PWS move from the lab to the clinic?
  This session explains the drug development process and the crucial role that families play in advancing research. Hear directly from clinical trial representatives about current opportunities and how participation accelerates progress.

Interactive Workshops

• Supporting Siblings Workshop

  Living with someone who has PWS affects the whole family—and siblings are an important part of that story. Hear directly from siblings who share their experiences, challenges, and triumphs, then learn about the findings from interviews with 25 siblings and the valuable lessons they shared. Together, we’ll explore practical ways to nurture and support all of our children in the family. (Recommended for all ages)

• Navigating Behavior & Mental Health Workshop

  Behavior can be one of the biggest challenges for people with PWS and their families. In this session, four behavior and mental health experts will provide guidance on common behavioral challenges and effective strategies. Following the presentation, participants can join small-group discussions to ask questions, share experiences, and explore solutions in an interactive setting. (Recommended for ages 5+)

• New Parent Workshop

  This workshop is designed especially for parents of children newly diagnosed with PWS, from birth to 2 years. Join us in a supportive space to connect with other families, share experiences, and ask questions of a parent panel who are traveling this same journey just a few steps ahead. Together, we’ll build community, find reassurance, and celebrate the small victories along the way.

• Early Years Play Workshop

  Play is more than fun—it’s essential for early development, especially for young children with PWS. In this workshop, we’ll explore the importance of play in building cognitive, social, and motor skills. You’ll learn practical techniques and strategies to encourage and enhance play with your child, helping them grow, learn, and thrive in these critical early years.

More Sessions Just for You

• 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 current research is expanding our understanding of PWS and paving the way for future therapies. (Recommended for all ages)

• Caring for the Caregiver
  
  It is an understatement to say that parenting someone with PWS impacts our marriages, personal lives, and careers. 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. (Recommended for all ages)

• Musculoskeletal Issues in PWS

  People with PWS are at an increased risk for certain orthopaedic conditions that may require intervention. In this session, Dr. Harold Van Bosse will discuss common orthopaedic challenges, including flat feet, bone fragility, hip dysplasia, and scoliosis. Learn about treatment options, management strategies, and what families can do to support musculoskeletal health in individuals with PWS. (Recommended for all ages)

• Management of Behavior Issues in PWS

  Behavioral issues such as hyperphagia, temper tantrums, and difficulty with transitions can significantly affect the quality of life for individuals with PWS and their families. This presentation will provide a comprehensive overview of how medications can be used to manage behavioral challenges in PWS. Attendees will leave with a clearer understanding of the potential benefits and risks of medication use, helping families and caregivers make informed decisions about managing behavioral concerns. (Recommended for ages 5+)

• Setting up for School Success

  Developing an effective IEP for a student with PWS requires careful planning to address their unique educational, behavioral, and health-related needs. Dr. Destiny Pacha will provide a roadmap for creating an IEP that prioritizes safety, support, and student success, with strategies for fostering a structured, food-secure learning environment and collaborating effectively with school teams. (Recommended for ages 3 - 16)

Lunch Time Connections