Foundation for Prader-Willi Blog

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 exp...

December 23, 2025 Read More

Topics: Research

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. Add...

December 18, 2025 Read More

Topics: News

PWS Clinical Trials Alert

FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits, while others can be completed remotely. Some trials are testing new drugs, while others are intervention (...

December 17, 2025 Read More

Topics: Research

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 momentum to b...

December 11, 2025 Read More

Topics: Stories of Hope, PWS People

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 ...

December 9, 2025 Read More

Topics: Parents

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).

December 3, 2025 Read More

Topics: News

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...

November 25, 2025 Read More

Topics: Research, Parents, Learning

Behavior and Flexibility in PWS: Expert Advice for Families

Behavioral challenges are among the most difficult aspects of Prader-Willi syndrome (PWS). These challenges affect the individual, family, school, and community. Anxiety, rigidity, and difficulty with transitions can make daily life unpredictable and...

November 18, 2025 Read More

Topics: Parents, Behavior

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 Pr...

November 14, 2025 Read More

Topics: Research, Schaaf-Yang Syndrome

FPWR Blog

Categories

Pitolisant for Daytime Sleepiness in PWS: New Research Findings

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

PWS Clinical Trials Alert

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

Self-Care for Caregivers: Your Well-Being Matters

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

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

Behavior and Flexibility in PWS: Expert Advice for Families

FPWR Awards More Than $2.1 Million in Research Grants in 2025

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