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2022 PWS Research Symposium and Family Conference

This September 29-October 1, parents, caregivers and medical professionals in the PWS community will come together for FPWR's Annual Conference!

This September 29 - October 1, parents, caregivers and medical professionals from across the country will once again be coming together to connect, learn, and be inspired at the Foundation for Prader-Willi Research’s Annual Research Symposium and Family Conference!

2019FPWRNewOrleans-6793The two-day family conference brings together over 300 members of our PWS community, allowing you to network with researchers, question the experts, and brainstorm with other amazing parents who are committed to eliminating the challenges of PWS.

To share what has been learned in recent behavioral research studies and arm you with the latest strategies, we have invited several of the top experts in the world to speak on the topic of behavior. Attend a panel discussion with behavioral experts: Dr. Diane Stafford, Elizabeth Roof, Dr. Deepan Singh and Dr. Lauren Schwartz, then choose among several breakouts focusing on: 

  • Behavior and Mental Health in PWS
  • ABA Therapy
  • Standards of Care2019FPWRNewOrleans-6832

Also, back by popular demand, we have sessions on:

  • Feeding Techniques For Children Ages 0-2 with Sara Parker
  • Orthopedic Challenges in PWS and Treating Orthopedic Impairments with Dr. van Bosse and Dr. Nora Wagner
  • Highlights from the PWS Research Symposium
  • Updates and information on PWS Clinical Trials
  • New Parent Session
  • Specialty sessions for parents of children with Schaaf-Yang 
  • And more!

With premier experts in their fields and the backdrop of Chicago, this year’s conference promises to be an event to remember! Register soon - we have a killer deal on rooms ($201/night) but they are limited, and you will only get the discount code after you register for conference. Learn more about the 2022 conference and register here. 


Can’t get enough of the science? The FPWR Research Symposium is FREE to all families on Friday morning!


Hear What Past Conference Participants Say ...

“The FPWR conference was the biggest ray of hope for our family. We knew the foundation was working hard to help our Catherine live life full but hearing from the researchers who are in the lab was incredible. We saw their intelligence and their passion and it made it real that treatments for PWS are within reach. We also met other families refusing to take their diagnosis lying down. We were surrounded by moms and dads who are in the ring fighting for a brighter future for their child and for mine. They focus on thriving instead of just surviving. And they do it with joy and optimism! What an amazing community!”
- Bailey Beasley, Parent of Catherine

“Great weekend discovering the latest and greatest in PWS research. The scientific and medical communities are well on their way to helping our loved ones live an independent life.”

- Rachael Fischer, Parent of Jude

Register for the Conference

Topics: Research, Parents, Learning

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.