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Foundation for Prader-Willi Blog | Research

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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

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

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

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

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

PWS Registry Data: Dermatology

When it comes to dermatological or skin issues in PWS, the first things that may come to mind are sensitivity to the sun due to fair skin and skin picking. However, there are a variety of additional skin-related concerns for individuals with PWS.
March 16, 2026 Read More

Topics: Research

The Global PWS Registry: Turning Lived Experience Into Better Care

Families living with Prader-Willi syndrome are changing how PWS is understood, studied, and treated.
February 24, 2026 Read More

Topics: News, Research, Parents

PWS Registry Data: 70% Report Sleep Issues In PWS

Sleep is a common challenge among people with PWS. Whether it is daytime sleepiness, getting up at all hours of the night, early waking, or another sleep-related issue, sleep challenges not only affect the individual with PWS but the entire family. T...
February 12, 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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