Foundation for Prader-Willi Blog (2)

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

Caregiver Perspectives: Insights on the COMPASS-PWS Trial

Background In response to Acadia Pharmaceuticals’ announcement that the COMPASS-PWS Phase 3 trial of intranasal carbetocin did not meet its primary or secondary endpoints and would not advance further, the Foundation for Prader-Willi Research (FPWR) ...

November 13, 2025 Read More

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

Understanding the endocrine system is essential for managing Prader-Willi syndrome (PWS). From infancy through adulthood, hormone-related challenges shape growth, development, metabolism, and overall health. In this 2025 FPWR Conference presentation,...

November 11, 2025 Read More

Topics: Therapeutic Development, Research