Prader-Willi Research

GLP-1 medications are getting a lot of attention, but are they safe or effective for people with PWS? FPWR and IPWSO brought experts together to outline how the PWS community can collect real world data and better understand the risks and benefits of G... hubs.la/Q03ZHfzc0

Excessive daytime sleepiness is a real struggle for many people with PWS. It affects focus, mood, and everyday life. New research on pitolisant offers encouraging early results, and a phase 3 trial (TEMPO) is now enrolling to learn more. #Pr... hubs.la/Q03YYxn50

Rhythm Pharmaceuticals has shared positive preliminary results from its exploratory Phase 2 trial of setmelanotide in people with PWS and announced plans to advance setmelanotide into a Phase 3 trial. The company has also initiated a study to evaluate... hubs.la/Q03YBmlt0

Fourteen walks. One incredible community. In 2025, One Small Step events across the country raised $354,000 for PWS research, surpassing our goal by more than $100,000. Thank you to every host, team, sponsor, and supporter who made this possi... hubs.la/Q03XXq6D0

When you are caring for someone with PWS, it can feel like there is nothing left for you at the end of the day. But taking care of yourself is one of the best ways to care for your child. #PraderWilli #PWS #PWSFamilies hubs.la/Q03XsLTx0

This year brought breakthroughs, new treatment options, and powerful progress in PWS and SYS research. Together, we’re building a future full of hope. Read the full 2025 recap: #PraderWilli #PWS #SYS hubs.la/Q03WBHSh0

Save the date: FPWR’s 2026 PWS Family Conference is coming to Philadelphia, Oct 9–10, 2026. Workshops, research updates, expert sessions, and community connection for every age and stage. 💙 Registration is now open! #PWS #PraderWilli #FPWR #PWSCommunity hubs.la/Q03VRVtZ0

Behavioral challenges can be some of the most difficult parts of life with PWS. Experts from Vanderbilt, Case Western, Latham Centers, and the University of Birmingham share research-based strategies to help families: #PWS #PraderWilli hubs.la/Q03TKT4h0

There’s still time to join the flock 🦃 🦃 Donations MATCHED! Let’s go Harvesting Hope! hubs.la/Q03Lyf_G0

FPWR Awards More Than $2.1 Million in Research Grants in 2025 - Second round of grant awards selects seven additional research projects for FPWR funding. hubs.la/Q03Tc5fy0

Caregiver Perspectives: Insights on the COMPASS-PWS Trial - Caregivers share their perceived benefits and challenges from the Carbetocin study and provide recommendations for future clinical trials. hubs.la/Q03S_JTR0

🧠✨At the 2025 FPWR Conference, Dr. Jennifer Miller, a leading pediatric endocrinologist, shared the latest insights on endocrine care - from early growth hormone therapy to managing puberty, thyroid health, hyperphagia, and new treatment trials: #Pr... hubs.la/Q03SDXNN0

🎨 Our 2025 Artist of the Year competition was a huge success, raising more than $25,000 for Prader-Willi and Schaaf-Yang syndrome research! Meet our 2025 Artist of the Year and see the incredible artwork from all our talented participants: #PraderW... hubs.la/Q03RCwwh0

🌞 Dominique had never heard of Prader-Willi syndrome before her son was diagnosed with it. Now Charlie is in elementary school, and he is loved by everyone. #PraderWilli hubs.la/Q03LzG0v0

☁️Our children with PWS face high risks of of developing serious mental health conditions. Learn to look for changes in eating, behavior, sleep, and grooming to address mental health challenges early on. #PraderWilli hubs.la/Q03Lzx6H0

👣 From the NICU to leading the walk. Read how Miles’s family hosted One Small Step and how you can start your own: hubs.la/Q03LzQvK0 #PWS #PraderWilli

A new school year 🎒can be extra challenging for children living with PWS and excessive daytime sleepiness (EDS). Learn about the challenges and strategies from 3 families who have been there. #PraderWilli hubs.la/Q03Lzxbg0

🌍 From powerful panels to cutting-edge science, the #UnitedInHope2025 conference brought together 1,200+ people for a week of learning, connection, and hope. Catch the highlights: hubs.la/Q03LzJ540

By participating in the 🌎Global PWS Registry, families become part of the research team, helping uncover new directions in therapies and treatment. Learn more about this informative and empowering tool. #PraderWilli hubs.la/Q03LzJ620

Miles and matched donations. Let’s do this! hubs.la/Q03Ly5cC0