Foundation for Prader-Willi Blog

FPWR

What’s Sending People with PWS to the Emergency Department?

When you’re caring for someone with Prader-Willi syndrome (PWS), you become an expert at navigating complex medical and behavioral needs. But even with the best care, emergencies can still happen. A new study, funded by FPWR and led by Dr. James Lucc...

May 27, 2026 Read More

Topics: Clinical Issues, Research

Phase 2 Clinical Trial for Prader-Willi Syndrome Now Enrolling: CSTI-500

A new phase 2 study is evaluating CSTI-500, an investigational medication being developed to address some of the most challenging symptoms of PWS, including hyperphagia and behavioral dysregulation. Researchers will study the safety, tolerability, an...

May 22, 2026 Read More

Topics: Clinical Trials

Aardvark Therapeutics to Unblind Data Following FDA Clinical Hold

Aardvark Therapeutics has announced that the U.S. Food and Drug Administration (FDA) has placed a full clinical hold on its investigational new drug application (IND) for ARD-101 related to the Company’s previously announced voluntary pause.

May 14, 2026 Read More

Topics: Clinical Trials

Celebrating the Strengths of People with Prader-Willi Syndrome

When people think about Prader-Willi syndrome (PWS), conversations often focus on the challenges. But just as important—and too often overlooked—are the strengths and positive attributes that define individuals with PWS.

May 13, 2026 Read More

Topics: Global PWS Registry

Expert Guidance Published for DCCR (VYKAT™ XR) Use in Prader-Willi Syndrome

An expert review, written by Drs. Miller, Shoemaker, Salehi, and Corletto, offers practical clinical guidance for the use of diazoxide choline extended-release (DCCR/VYKAT™ XR), the first FDA-approved treatment for hyperphagia in Prader-Willi syndrom...

May 11, 2026 Read More

Parents Seek Answers, Leaders Step Forward

In January 2008, The Dallas Morning News published an article titled “Parents Seek Answers.” At the center of the story was Kathryn McGhee, a mother navigating the daily realities of Prader-Willi syndrome while also helping shape a growing research m...

May 10, 2026 Read More

Topics: Stories of Hope, Research, Parents, hopefull

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

Topics: Research, Global PWS Registry