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FPWR Blog

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Addison's Army Started with One Small Step

The night before One Small Step Maryland, Jen Lieberman was worried nobody would come. By the next morning, her family was scrambling to find more raffle tickets. "My brother-in-law literally ran to Staples," Jake laughed. "We were looking around thi...
June 12, 2026 Read More

Topics: Stories of Hope, Research, Parents, hopefull

Team FPWR Takes on the 2026 TCS New York City Marathon

This year’s Team FPWR roster is something special. Our 2026 runners come from all over the country and are running for daughters, cousins, sisters, friends, nieces, and aunts impacted by Prader-Willi syndrome and Schaaf-Yang syndrome. Among them is a...
June 10, 2026 Read More

Topics: Stories of Hope

Spinal Fusion Surgery in Prader-Willi Syndrome: Preparing for Surgery and Recovery

This article includes personal experiences shared by Lisa Matesevac and clinical guidance from Dr. Harold van Bosse, MD
June 5, 2026 Read More

Topics: Scoliosis

Understanding Scoliosis in Prader-Willi Syndrome: From Early Curves to Surgical Decisions

Scoliosis is a common orthopedic complication in Prader-Willi syndrome (PWS), affecting the majority of individuals at some point during infancy, childhood, or adolescence. Scoliosis in PWS is not the same as the more familiar forms of scoliosis. Dif...
June 3, 2026 Read More

Topics: Scoliosis

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

Topics: News

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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