Select Sessions from our 2024 Research Symposium and Family Conference Now Available

We're excited to announce that select sessions from our recent PWS Research Symposium and Family Conference are now available to watch! This year’s event brought together leading experts, researchers, and families from around the world to explore the latest advancements in Prader-Willi syndrome research and care. Whether you were able to join us or couldn’t make it, now you can access these insightful presentations on-demand. Dive into the sessions to stay informed on groundbreaking research and hear from experts dedicated to improving the lives of those living with PWS!

Q&A with Anish Bhatnagar, CEO of Soleno Therapeutics
Soleno Therapeutics has submitted a new drug application for DCCR, a potential treatment for hyperphagia. In this short interview, Anish Bhatnagar gives us an update on the review process and what we can expect. Watch now >>

Standards of Care for Children with PWS Ages 0-9
Dr. Parisa Salehi is a Pediatric Endocrinologist at Seattle Children's and SCH PWS Clinic Clinical Director. In this session, she provides an overview of care for people with PWS over age 0-9 including medical needs, currently available medications, nutritional phases, ortho screening, GI, and which doctors to see. Watch now >>

Advancing Hope – PWS Clinical Trials Overview
Learn more about the drug development process and current clinical trial opportunities. Panelists include representatives from Aardvark (ARD101), Acadia (Carebetocin), Harmony (Pitolisant), Dr. Deepan Singh (VNS4PWS and Light Therapy) and Wellcast. Watch now >>

Growing Up with a Sibling with PWS
Explore the profound impact of growing up with someone diagnosed with PWS in this session, featuring results from a recent FPWR study. For this study one-on-one interviews were conducted with siblings to gain an in-depth understanding of their experiences including potential impacts on their coping, eating habits, emotional and physical well-being, and strategies that have been helpful for their coping.  We will discuss how growing up in these special families has shaped their educational and career paths as well as resources and other tools to support and celebrate siblings of people with PWS. Watch now >>

Safety + Support = Success. Does Your IEP Add Up?
Dr. Destiny Pacha is a PWS Education Specialist and president of EmpowerED Solutions. In this session, she provides an overview of the educational implications of PWS and the Individuals with Disabilities Education Act (IDEA). She will also discuss appropriate accommodations, specialized and related services, and learning strategies to meet your loved one’s unique educational needs. Watch now >>

What’s Happening in PWS 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 now >> 

Understanding & Utilizing Your Insurance Benefits
This discussion centers on understanding and utilizing your Employer-sponsored health insurance benefits, but will also touch on state provided Medicaid, along with ancillary benefits that are typically provided by employers. Gain a working knowledge of these benefits and why they are particularly important when you have a child with special needs. Watch Now >>

The First 48 Hours.  Simple but Important Rapid Estate Planning.
Every family should have a comprehensive estate plans and Special Needs Trusts. But what happens if you don’t make it home from dinner, or If you’re suddenly incapacitated? This talk will provide some simple and inexpensive steps that could make a big difference. Watch now >>

Schaaf-Yang Syndrome with Dr. Schaaf: What We Know and What is Still to be Learned
Join Dr. Christian Schaaf to learn more about Schaaf-Yang syndrome in this recorded session from FPWR's 2024 Family Conference. Watch now >>