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FPWR Blog

PWS Registry Added 208 Participants In Past Year [INFOGRAPHIC]

The Global PWS Registry continues to grow and strengthen as a valuable resource and research tool for the PWS community. The Registry currently has 1,846 participants. Over the past 12 months (July 2020-July 2021), the Registry has grown by over 12% ...

Topics: Research

Grandma Takes One SMALL Step for PWS Research

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.” His blood su...

Topics: Stories of Hope

New Paper Provides Data on Vision Problems in People with PWS

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 other vision con...

Topics: Research

Dispelling the Myths Of Our Life With PWS

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 would have sleepless nights....

Topics: Stories of Hope

PWS Clinical Trial Opportunity: Pitolisant

A phase 2 study of Pitolisant is enrolling patients ages 6 to 65  years old to evaluate the safety and impact of an investigational medicine, Pitolisant, for excessive daytime sleepiness, cognition, and behavioral function in people with PWS. A live ...

Topics: Research

FPWR and PWSA | USA Engage FDA in Patient Listening Session

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 members of t...

Topics: News

Radius Health Announces Pivotal Study for Prader-Willi Syndrome

Radius Health announced today their plans for a Pivotal Study for RAD011 for the treatment of hyperphagia in Prader-Willi syndrome. The Phase 2/3 study, SCOUT (Synthetic Cannabidiol Oral Solution), will evaluate safety and tolerability in PWS and is ...

Topics: News

Unique Art Auction Benefits PWS Research

  More than 30 unique paintings are available to the highest bidders in a unique art auction benefiting the Foundation for Prader-Willi Research (FPWR).

Topics: News

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