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Research (11)

Unique MAGEL2 Findings Point to Potential PWS and SYS Genetic Therapy

September 9, 2021

Dr. Rachel Wevrick and her team have just published a new paper looking at the function of the protein encoded by the MAGEL2 gene, one of the genes in the PWS region of chromosome 15. This is the first-ever study

New Paper Provides Data on Vision Problems in People with PWS

August 16, 2021

Thanks to the participation of so many in our community, our team was able to share the largest study ever on eye problems in PWS, using data from the Global PWS Registry. The paper “Incidence of strabismus, strabismus surgeries, and

New Paper Provides Definitions of Common PWS Behavioral Features

July 13, 2021

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

New PWS Research Compares Mini-Brains In A Dish

July 6, 2021

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

Research Confirms Growth Hormone Does Not Worsen Scoliosis

July 1, 2021

Scoliosis is common in people with Prader-Willi syndrome (PWS), occurring in approximately 80% of individuals over the age of 10 (compared to 3% in the general population). Because scoliosis often develops or progresses during periods of growth, families and healthcare

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

June 18, 2021

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 stomach

Next Steps In PWS Advocacy

June 11, 2021

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 disease burden

Hyperphagia Leads to Increased Caregiver Burden Across the Lifespan

May 21, 2021

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

FPWR Launches First of Kind PWS Genome Project

May 14, 2021

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

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