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FPWR

Skin Picking in Prader-Willi Syndrome: Why It Happens and What Can Help

April 8, 2026

Skin picking is a common and challenging behavior seen in people with Prader-Willi syndrome (PWS), and for many families, it can be incredibly distressing. A small scratch, scab, or bug bite can quickly turn into a wound that is difficult

From the NICU to Hosting a Walk for Prader-Willi Syndrome Research

April 3, 2026

For lack of a better phrase to emphasize the heaviness and intensity of the beginning: those days were hard. For those who have walked this path, you’ll resonate with those initial feelings: fear, grief, shock, and overwhelm intertwined with an

A Grandmother’s Love: Showing Up for Miles and the PWS Community

March 28, 2026

When our family learned that Miles had Prader-Willi syndrome, everything changed. I had never heard of PWS before, and I was in shock. I was scared and heartbroken for Josh and Carolyn. All I could think was, What are we

A mother holds her child in a quiet moment, reflecting the emotional care involved in raising a child with Prader-Willi syndrome.

When the Well-Being of Caregivers is Supported, Everyone Benefits

March 25, 2026

Parents of children with Prader-Willi syndrome don’t need to be told that caregiving is hard — you live it every day. You juggle medical complexity, behavioral challenges, constant vigilance around food, and the emotional weight of advocating for your child

Child with Prader-Willi syndrome asleep in a stroller outdoors during the daytime.

The Impact of Sleep on Behavior and Mental Health in PWS

March 3, 2026

Sleep challenges affect more than 70% of individuals with Prader-Willi syndrome (PWS). Excessive daytime sleepiness, disrupted nighttime sleep, altered REM patterns, and sleep-disordered breathing all contribute to a complex sleep profile that affects daily life. Sleep in PWS is not

The Global PWS Registry: Turning Lived Experience Into Better Care

February 24, 2026

Families living with Prader-Willi syndrome are changing how PWS is understood, studied, and treated. In a recent episode of the PWS United podcast, members of FPWR’s research team shared how ten years of family participation in the Global PWS Registry

Why I Will Always Celebrate the Beauty of My Son’s Rareness

February 18, 2026

A Rare Disease Day Tribute by Rebecca McWilliams, Mom to Kieran In my wildest dreams, I never thought this day would hold such profound meaning for me. Yet when your beautiful child is born and swiftly diagnosed with a disorder

Anxiety and Repetitive Behaviors in PWS: Understanding the Cycle and Ways to Help

February 4, 2026

We have all heard the classic riddle: which came first, the chicken or the egg? When it comes to anxiety and repetitive behaviors in Prader-Willi syndrome (PWS), many parents and caregivers feel stuck in a similar loop. Does anxiety fuel

The FPWR Therapeutic Accelerator Program: Bridging Research and Development

January 26, 2026

While much of FPWR’s work starts with discovery research, our mission extends across the full drug development pathway, supporting progress from foundational science all the way to potential treatments for Prader-Willi syndrome (PWS). Discovery research is where scientists ask the

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