Foundation for Prader-Willi Blog (2)

HopeFULL Highlights: Unlocking What’s Possible

May is PWS Awareness Month. It’s a time to better understand Prader-Willi syndrome and to see what’s possible. In this edition of HopeFULL Highlights, three families share what makes their loved ones remarkable, including recent milestones and the mo...

May 6, 2026 Read More

Topics: Stories of Hope

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 (...

May 1, 2026 Read More

Topics: Research

Study Sheds Light on Temper Outbursts in Prader-Willi Syndrome

Families raising a child with Prader-Willi syndrome know how difficult temper outbursts can be. In the study “The Characteristics of Temper Outbursts in Prader-Willi Syndrome,” Drs. Rice, Einfeld, and Woodcock, experts in the field of PWS, took a clo...

April 29, 2026 Read More

Topics: Research

FPWR Invests in ConSynance Therapeutics to Advance New Treatment for Prader-Willi Syndrome

The Foundation for Prader-Willi Research (FPWR) today announced a venture philanthropy investment in ConSynance Therapeutics, a clinical-stage biotechnology company developing CSTI-500, an investigational therapy for the treatment of behavioral dysre...

April 15, 2026 Read More

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

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.

April 8, 2026 Read More

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

For lack of a better phrase to emphasize the heaviness and intensity of the beginning: those days were hard.

April 3, 2026 Read More

Topics: Stories of Hope, hopefull

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

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 going to do?

March 28, 2026 Read More

Topics: Stories of Hope, hopefull

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

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 you...

March 25, 2026 Read More

Topics: Mental Health, Research

Growing Into Independence: Emma’s Journey Continues

It’s been quite a journey since I first wrote about Emma for FPWR. In the years since, she has moved through many milestones, each one bringing its own mix of challenge, growth, and pride.

March 23, 2026 Read More

Topics: Stories of Hope

FPWR Blog

Categories

HopeFULL Highlights: Unlocking What’s Possible

PWS Clinical Trials Alert

Study Sheds Light on Temper Outbursts in Prader-Willi Syndrome

FPWR Invests in ConSynance Therapeutics to Advance New Treatment for Prader-Willi Syndrome

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

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

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

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

Growing Into Independence: Emma’s Journey Continues

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