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FPWR Blog

Carbetocin Clinical Trial Update [2021 CONFERENCE VIDEO]

In this 35‑minute video, Sara Cotter, founder and CEO of Levo Therapeutics, joins other members of the Levo team in describing the company’s mission of developing impactful therapies for the PWS community. The session includes Q&A from participan...

Topics: Research

Changes Announced to Make Participation in Pitolisant Study Easier

Harmony Biosciences recently announced changes to their Phase 2 Clinical Trial of Pitolisant that reduce the requirements of participating in the study.

Topics: Research

FPWR Board President 'Find What Brings You Hope'

A special contribution by guest blogger Jeannine Kowal, FPWR Board President Share your story via our Stories of Hope Questionnaire. Caitlin's birth was uneventful. Caitlin's birth was induced at thirty‑nine and a half weeks because of growth concern...

Topics: Stories of Hope

Identifying Mental Health Issues in People with PWS [2021 CONFERENCE VIDEO]

In this one hour and 9‑minute video, Dr. Lauren Schwartz Roth, a clinical psychologist and parent to a young adult with PWS, explains how parents and caregivers can effectively assess and manage mental health issues if they arise in loved ones with P...

Topics: Research

New Study of ARD-101 Now Enrolling Participants Ages 17-65

ARD-101 is a new, oral therapeutic that has shown promising activity in reducing appetite and promoting weight loss in preclinical (animal model) studies.

Topics: Research

Sensory Integration for Children with PWS [2021 CONFERENCE VIDEO]

In this 60‑minute video, Janice Agarwal, a Pediatric Physical Therapist, explains how children with PWS have decreased sensory awareness and how you can help your child with sensory integration. The session includes Q&A from participants in the 2...

Topics: Research

What's Happening In PWS Research? [2021 CONFERENCE VIDEO]

In this 67‑minute video, Dr. Theresa Strong and the FPWR Research Team share highlights of projects we are currently advancing. The session includes Q&A from participants in the 2021 FPWR Virtual Conference.

Topics: Research

Newborn Screening Test for PWS Paves the Way for Earlier Diagnosis

Research at a Glance: A new test, funded in part by FPWR, has been designed to simultaneously screen newborns for three rare genetic disorders In a recent study, the test was found to be feasible, reliable, and scalable Screening for Prader Willi, An...

Topics: Research

Encouraging Update from Soleno Therapeutics Regarding DCCR

Soleno Therapeutics has provided an update following recent interactions with the U.S. Food and Drug Administration (FDA) regarding the development of once-daily DCCR (diazoxide choline) extended-release tablets for the treatment of Prader-Willi synd...

Topics: Research