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FPWR Blog

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.

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.

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...

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...

Topics: Stories of Hope, Research, Parents, hopefull

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...

Topics: Stories of Hope

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...

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...

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.

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.

Topics: Stories of Hope, hopefull