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Prader-Willi Research @fpwr

Foundation for Prader-Willi Research focused on treatments & cure for PWS

Joined September 2009
  • Tweets 6,625
  • Following 48
  • Followers 2,011
1,434 Photos and videos
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

Are GLP-1s Safe and Effective for People with PWS?

FPWR and IPWSO experts review the evidence and outline how real world data on GLP-1 use in Prader-Willi syndrome can clarify safety, benefits, and risks.

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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

Pitolisant for Daytime Sleepiness in PWS: New Research Findings

New studies suggest pitolisant may reduce excessive daytime sleepiness and improve behavior in PWS.

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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

Positive Preliminary Results with Setmelanotide and Plans for Evaluation of RM-718 for PWS

Rhythm Pharmaceuticals shares positive preliminary results from Phase 2 trial of setmelanotide. The company has also initiated a Phase 1 study of RM-718.

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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

One Small Step 2025: A Record-Breaking Year of Impact

Fourteen One Small Step walks exceed FPWR’s 2025 fundraising goal by more than $100,000 for PWS research.

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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

Self-Care for Caregivers: Your Well-Being Matters

Learn why caring for your own mental and physical health helps your child with PWS, plus practical self-care ideas you can fit into everyday life.

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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

Reflecting on 2025: A Year of Breakthroughs, Milestones, and Momentum

Explore FPWR’s 2025 highlights, including VYKAT XR approval, advances in gene therapy, new clinical trial progress, and expanded resources for families.

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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

Save the Date for FPWR’s 2026 PWS Family Conference & Workshops

Join FPWR’s 2026 PWS Family Conference in Philadelphia on October 9–10. Connect with families, experts, and researchers through shared experiences.

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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

Behavior and Flexibility in PWS: Expert Advice for Families

Leading PWS experts share practical strategies for managing behavior, building flexibility, and supporting positive routines for children and families.

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

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.

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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

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.

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🧠✨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

Endocrine Care for Children with Prader-Willi Syndrome: 2025 Conference Insights

Learn from Dr. Jennifer Miller’s 2025 FPWR Conference presentation on endocrine care in children with Prader-Willi syndrome.

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🎨 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

Artist of the Year 2025 Winners: Celebrating Creativity and Hope

Meet FPWR’s 2025 Artist of the Year, Dinah White, and the inspiring artists whose creativity helped raise over $25,000 for PWS and SYS research.

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🌞 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

Mom Sees Past Obstacles of PWS to Find Hope In Research and Community

A mom recalls the challenges of her son's diagnosis and — 10 years later — sees hope from research and from seeing him and others overcome the obstacles of PWS.

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☁️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

Serious Mental Health Problems in Prader-Willi Syndrome

Learn how to identify issues with mental health in PWS, where to get help, and how to begin treatment.

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👣 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

From NICU to Leading the Walk: Miles’ Story and the Power of One Small Step

Hosting a fundraiser might sound intimidating—but Carolyn shows it doesn’t have to be. Her One Small Step story is full of heart, hope, and helpful tips.

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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

School Interrupted: Three Families Share their Experiences with PWS and Excessive Daytime Sleepin...

A Guest Blog Post from Harmony Biosciences: PWS, Excessive Daytime Sleepiness, and Behavior.

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🌍 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

Post-Conference Glow: Highlights from United in Hope 2025

From family-focused panels and presenters to cutting-edge research presentations, the United in Hope International PWSW Conference was packed with powerful moments.

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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

The Global PWS Registry: Empowering Families, Advancing Research

The Global PWS Registry is essential to advancing research. Here’s how to get involved, and what participation means to the future of PWS.

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