Dream, Believe, Achieve
I’m a mom, so you know my memory is full of as many holes as Swiss cheese. I can’t remember much of anything that took place more than 5 years ago. On particularly fine days, I may be lucky to
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Pitolisant for Daytime Sleepiness in PWS: New Research Findings
Families and caregivers in the Prader-Willi syndrome (PWS) community whose loved one experiences excessive daytime sleepiness (EDS) know just how challenging it can be in daily life. Data from the Global PWS Registry show that 55% of participants experience significant
Positive Preliminary Results with Setmelanotide and Plans for Evaluation of RM-718 for PWS
Rhythm Pharmaceuticals has shared positive preliminary results from its exploratory Phase 2 trial of setmelanotide in people with PWS and announced, pending successful completion of this phase, plans to advance setmelanotide into a Phase 3 trial. Additionally, the company has
One Small Step 2025: A Record-Breaking Year of Impact
One Small Step set out with a bold goal in 2025: raise $250,000 for Prader-Willi syndrome research. Thanks to an unstoppable community, that goal was blown right out of the water. This year, One Small Step raised $354,000, bringing real
Self-Care for Caregivers: Your Well-Being Matters
Caring for a child or adult with Prader-Willi syndrome (PWS) often means juggling medical appointments, behavior plans, daily routines, and the emotional ups and downs that come with them. Too often, caregivers put their own needs last — not because
Reflecting on 2025: A Year of Breakthroughs, Milestones, and Momentum
As we wrap up 2025, we’re celebrating a year shaped by real progress… scientific breakthroughs, new treatment pathways, and meaningful improvements in care for people with Prader-Willi syndrome (PWS) and Schaaf-Yang syndrome (SYS). Every step forward this year was fueled
Save the Date for FPWR’s 2026 PWS Family Conference & Workshops
Mark your calendars and join us October 9–10, 2026, as parents, caregivers, and medical professionals from across the country gather in Philadelphia, Pennsylvania for FPWR’s 2026 PWS Family Conference — a two-day event designed to connect, learn, and be inspired.
Managing Behavior and Flexibility in PWS: Expert Strategies
Behavioral challenges are one of the most complex parts of Prader-Willi syndrome (PWS). Anxiety, rigidity, difficulty with transitions, and emotional overwhelm can affect daily life at home, at school, and in the community. Families often ask: Will treating hyperphagia improve
FPWR Awards More Than $2.1 Million in Research Grants in 2025
We are pleased to announce the recipients of our second round of grants for 2025, totaling $925,117 in awards, as part of the Foundation for Prader-Willi Research’s (FPWR) ongoing commitment to advancing innovative research and bold initiatives in Prader-Willi syndrome
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