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Foundation for Prader-Willi Blog | Research (2)

New Paper Provides Definitions of Common PWS Behavioral Features

As any parent of loved ones with PWS can attest, defining the spectrum of symptoms of PWS can be a challenge! To help solve that problem, a paper has been published that provides consistent descriptions of common PWS–related behaviors. The paper prov...

Topics: Research

New PWS Research Compares Mini-Brains In A Dish

Dr. Gua-Li Ming from the University of Pennsylvania has developed a new cellular model of PWS: a 3D organoid that mimics the arcuate nucleus found in the hypothalamus. This organoid, derived from stem cells with PWS, was compared to a typically devel...

Topics: Research

Study Confirms Growth Hormone for PWS Does Not Worsen Scoliosis

A new long-term study on scoliosis and growth hormone has been published. The publication, Effects of 8 Years of Growth Hormone Treatment On Scoliosis In Children With Prader-Willi Syndrome shows that 8 years of growth hormone treatment has no advers...

Topics: Research

PWS Registry Data: GI Issues in Prader-Willi Syndrome [INFOGRAPHIC]

Individuals with PWS suffer from a variety of digestive and gastrointestinal issues (GI), some of which can lead to surgery. Here, we focus on data from the Global PWS Registry to provide information on the prevalence of gastroparesis (delayed stomac...

Topics: Research

Pitolisant for Excessive Daytime Sleepiness in PWS [2020 CONFERENCE VIDEO]

In this 30‑minute video, Albena Patroneva from Harmony Biosciences explains what pitolisant is and how it works, and describes Harmony's Phase 2 clinical trial of pitolisant in patients with PWS. The session includes Q&A from participants in the ...

Topics: Research

Next Steps In PWS Advocacy

For more than a decade, FPWR has partnered with families and other PWS groups (PWSA|USA, IPWSO) to advocate for PWS treatments. We've worked diligently to build resources that address the FDA’s call for patient experience data, demonstrating high dis...

Topics: Research

FPWR Announces First Round of 2021 Grant Awards for PWS Research [VIDEO]

The Foundation for Prader-Willi Research announces our first round of Research Awards in 2021 totaling $359,100. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, ha...

Topics: Research

Hyperphagia Leads to Increased Caregiver Burden Across the Lifespan

Hyperphagia is a life-long concern for individuals with PWS and their caregivers. In a recently published study conducted by FPWR and the PWS Clinical Trials Consortium, we found caregiver burden increases as the person with PWS gets older, and as hy...

Topics: Research

Optimal Nutrition for People With PWS [2020 CONFERENCE VIDEO]

In this 60‑minute workshop, Melanie Silverman explains optimal nutrition for children and adults with Prader‑Willi Syndrome. She includes online resources and gives tips on how to handle feeding times and varying diets. The session includes Q&A f...

Topics: Research

FPWR Launches First of Kind PWS Genome Project

FPWR is pleased to announce the launch of an exciting new research study: the PWS Genome Project. This study will provide new insight into how variations across the entire genome influence the range and severity of symptoms in people with Prader-Will...

Topics: Research