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FPWR Blog

PWS Clinical Trials Alert

  FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits while others can be completed remotely.  Some trials are testing new drugs while others are intervention ...

Topics: Research

PATH for PWS Data Supports Positive Findings From DCCR Trial

Data from the PATH for PWS study, an ongoing natural history study of individuals with PWS sponsored by the Foundation for Prader-Willi Research, supports the benefits observed in the open-label study (C602) of DCCR.  Analysis of trial data has shown...

Topics: Research

FDA Advisory Committee to Review Carbetocin (LV101) as PWS Treatment

Levo Therapeutic’s New Drug Application (NDA) for carbetocin as a treatment for PWS has been scheduled for a public meeting of the Psychopharmacologic Drugs Advisory Committee to be held on November 4th, 2021. The Food and Drug Administration (FDA) c...

Topics: Research

Unique MAGEL2 Findings Point to Potential PWS and SYS Genetic Therapy

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 to look at the first part of MAGEL2. ...

Topics: Research

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