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Navigating PWS: Stories, Strategies, and Insights from the FPWR Conference

January 8, 2025

The 2024 FPWR Conference opened with a powerful session featuring a panel of experts that left attendees inspired and better equipped to navigate the challenges of PWS. From addressing behavioral challenges to securing effective Individualized Education Plans (IEPs) and learning

Growing Up With a Sibling With PWS: Insights from the FPWR Conference

December 12, 2024

"Growing Up with a Sibling with PWS," recorded at our 2024 Family Conference, is a heartfelt and detailed presentation that explores the experiences of siblings of children with Prader-Willi Syndrome (PWS). Led by Dr. Lauren Schwartz Roth, a researcher and

2024 FPWR PWS/SYS Research Symposium Retrospective

October 30, 2024

In September, we were honored to host our annual meeting of researchers, physicians, and pharmaceutical companies interested in Prader-Willi or Schaaf-Yang syndromes. This event is consistently invigorating as the leaders in PWS/SYS research not only share their latest results and

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

October 2, 2024

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

FDA Grants Rare Pediatric Disease Designation to CSTI-500

July 26, 2024

The FDA has granted Rare Pediatric Disease Designation (RPDD) to ConSynance Therapeutics' new investigational drug, CSTI-500 for the treatment of Prader-Willi Syndrome in children and adolescents. This special status is granted to drugs and biologics intended to treat rare diseases,

22 Years of Hope: Kathryn McGhee's Dedication to Finding PWS Treatments

July 10, 2024

Kathryn McGhee has been an active member of our PWS community for 22 years, participating in numerous letter-writing campaigns and PWS clinical trials and hosting over a dozen fundraisers for FPWR! As a proud mom to Hannah (who recently turned

Katie and Adam Larson: A Decade of Dedication to Finding Treatments for PWS

June 24, 2024

Since first tapping into our community 12 years ago, Katie and Adam Larson have been ready to do whatever it takes to find treatments and a brighter future for their son, Graham. From co-hosting One SMALL Step walks to throwing

Understand Drug Development for Rare Diseases: Free Online Series

June 18, 2024

Have you ever wanted to know more about the drug development process and how patients and patient organizations like FPWR can engage with and inform the process? The National Organization for Rare Diseases (NORD) has developed a free educational series

Early School Years — Ages 3-8 [2023 Conference Video]

June 5, 2024

In this 1 hour and 52-minute video, Dr. Anastasia Dimitropoulos of the PRETEND Program, Staci Zimmerman, and Cindy Szapacs discuss social strategies, IEPs, and behavior in the early school years for children with PWS. Click below to watch the video.

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