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Research (5)

De-Risking Treatment Development: Paving the Way for Therapeutic Successes

November 19, 2024

The Foundation for Prader-Willi Research (FPWR) employs a "de-risking" funding strategy to accelerate the development of new treatments for Prader-Willi syndrome (PWS). We are here to take the risks, fund new ideas, and help build the resources that will advance

FPWR Announces 2nd Round of 2024 Grants

November 13, 2024

We are pleased to announce the recipients of our second round of grants for 2024, totaling $1,681,781 in awards, as part of the Foundation for Prader-Willi Research’s (FPWR) ongoing commitment to advancing research in Prader-Willi syndrome (PWS) and Schaaf-Yang syndrome

what-you-need-to-know-about-blood-clots-in-pws

Blood Clots in PWS: Risk Factors, Signs & Symptoms

November 8, 2024

Although rare overall, people with PWS have a higher risk for developing dangerous blood clots than the general population. A blood clot is a mass of blood that has changed from its liquid state into a semi-solid or gel-like form.

2024 FPWR PWS/SYS Research Symposium Retrospective

October 30, 2024

In September, we were honored to host our annual meeting of researchers, physicians, and pharmaceutical companies interested in Prader-Willi or Schaaf-Yang syndromes. This event is consistently invigorating as the leaders in PWS/SYS research not only share their latest results and

New Study Highlights the Severe Impact of COVID-19 for Individuals with PWS

September 19, 2024

As the COVID-19 pandemic continues to evolve, researchers are working hard to understand how the virus affects individuals with Prader-Willi syndrome (PWS). A recent study by FPWR Grant Recipient Dr. James Luccarelli and colleagues from the Massachusetts General Hospital/Harvard Medical

Exploring Type I and II Deletions in Prader-Willi: Cell-Level Insights

August 20, 2024

Most cases of Prader-Willi syndrome (PWS) are caused by a deletion on the paternally inherited copy of chromosome 15, but not all deletions are the same. Researchers recognize two main types—Type 1 (T1) and Type 2 (T2)—which differ in the

Webinar: What You Can Expect if You Participate in TEMPO, a Phase 3 Trial of Pitolisant

June 18, 2024

If your loved one with PWS struggles with daytime sleepiness, you may be interested in learning more about TEMPO, a phase 3 study of Pitolisant, now enrolling volunteers with PWS ages 6 to 65 years old. This study will evaluate

Why We Are HopeFULL for the Future of People with Prader-Willi Syndrome

June 13, 2024

Prader-Willi syndrome (PWS) is a complex genetic disorder with a range of challenging symptoms, including hyperphagia (excessive hunger), obesity, and behavioral issues. Despite these challenges, recent advancements in medical research and therapeutic developments offer substantial hope for individuals with PWS

FPWR Genome Study Insights: Caregiver Views on Pharmacogenomics for PWS

May 27, 2024

The FPWR Genome Study, full title “Whole Genome and RNA Sequencing Analysis in Prader-Willi Syndrome," is an ongoing whole genome sequencing study among 50 individuals with PWS. The goal of the study is to determine if genetic variants outside the

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