Session Descriptions

Caring for the Caregiver   

It is an understatement to say that parenting someone with SYS impacts our marriages, personal lives, and careers. In this session, attendees will hear from 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. 
Presented by: Amanda Griffith-Atkins, LMFT, PMHC,  Licensed therapist and founder of the Amanda Atkins Counseling Group 

What's Happening in SYS Research?

Dr. Marc Ridilla shares highlights of our FPWR SYS research initiatives. Learn more about what is happening in SYS research and what you can be excited about!                                                                         

Presented by: Marc Ridilla, Research Program Manager, FPWR

Schaaf-Yang Syndrome- Update from Heidelberg

Don't miss this chance to hear directly from Dr. Christian Schaaf.  He will each share about the research that's being done and exciting opportunities ahead!       

Presented by: Christian Schaaf, Medical director and Department Chair of the Institute of Human Genetics at the University of Heidelberg (Germany)

Navigating Behavior & Mental Health Workshop

Behavior can be a significant challenge for people with SYS and their families. In this session, our behavior and mental health experts will provide guidance on common behavioral challenges and strategies, and then participants will split into small groups to ask questions, share experiences, and explore practical solutions.
Guided by: Patrice Carroll, Director of PWS Services, Latham Centers,  Elizabeth Roof, Senior Research Specialist, Vanderbilt Kennedy Center, Deepan Singh, Child, Adolescent, and Adult Psychiatrist

Findings from the SYS Global Registry

Last year FPWR launched The Global SYS Registry!  Dr. Jessica Bohonowych will give you insight to what we are learning about the SYS community.  
Presented by: Jessica Bohonowych, Associate Director of Research Programs, FPWR

Muskuloskeletal Issues in SYS

People with SYS are at an increased risk for certain orthopaedic conditions that may require intervention. In this session, you will learn about common orthopaedic challenges, treatment options, management strategies, and what families can do to support musculoskeletal health in individuals with SYS. 
Presented by: Harold Van Bosse,  Pediatric Orthopaedic Surgeon

Accommodations

The 2026 conference will take place in Philadelphia, PA, at the Marriott Philadelphia Downtown.

A limited room block is available at the discounted rate of $221/night until September 15, 2026.

Details for our room block will be shared after tickets are purchased in our confirmation email.