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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

Diane Takes One SMALL Step for PWS Research

August 26, 2021

A special contribution by guest blogger Diane Schantin When Austin was born, our whole family was up at the hospital celebrating. I vividly remember the nurses coming in to check his vitals, watching their faces, and hearing, “Oh my God.”

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

Dispelling the Myths Of Our Life With PWS

August 5, 2021

A special contribution by guest blogger Lisa Matesevac Our youngest child, Evan, was born in 2006. Little did I know what big changes were coming in our lives. I knew we would be outnumbered with three children. I knew we

FPWR and PWSA | USA Engage FDA in Patient Listening Session

July 23, 2021

On June 17, 2021, FPWR and PWSA | USA engaged the FDA in a Patient-Led Listening Session to share our community’s experiences related to Prader-Willi syndrome (PWS). The purpose of this meeting was to promote dialogue between the FDA 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

FDA Grants Priority Review for Levo Therapeutics’ New Drug Application for LV-101 for the Treatment of Prader-Willi Syndrome

July 6, 2021

Levo Therapeutics has announced the FDA has granted Priority Review for its New Drug Application (NDA) for LV-101 (intranasal carbetocin) as a treatment for hyperphagia and behavioral distress associated with PWS. A 6-month Priority Review will accelerate the review process

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

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