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FPWR Blog

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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

FPWR Awards Seven New Research Grants in First Funding Round of 2026

We are pleased to announce the recipients of FPWR's first round of grants in 2026, totaling more than $1 million in funding to support innovative research and bold initiatives in Prader-Willi syndrome (PWS) and Schaaf-Yang syndrome (SYS).
May 21, 2026 Read More

Topics: Research, Schaaf-Yang Syndrome

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

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

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

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

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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Our Mission

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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440 N Barranca Ave #3620
Covina, CA 91723

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