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FPWR Launches 3 New Research Programs to Advance PWS Drug Development

March 8, 2022

With the support of the John C. Storr and Suzanne M. Storr Foundations, FPWR is excited to announce the launch of three new research programs designed to translate findings from the lab to human clinical trials, accelerating the development of

Friends gather around a One Small Step for PWS banner

Find What Brings You Hope

February 22, 2022

A special contribution by guest blogger Jeannine Kowal Caitlin's birth was uneventful. She was induced at thirty‑nine and a half weeks because of growth concerns. Her Apgar score was 8/9, and we were discharged from the hospital two days later.

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

February 9, 2022

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

Sensory Integration for Children with PWS [2021 CONFERENCE VIDEO]

February 3, 2022

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 2021 FPWR Virtual

new-test-to-screen-newborns-for-rare-genetic-disorders

Newborn Screening Test for PWS Paves the Way for Earlier Diagnosis

January 25, 2022

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

Pushing Beyond Her Comfort Zone, PWS Mom Advocates for Child's Future

December 31, 2021

A special contribution by guest blogger Charlotte Kellar. When Charlotte Kellar’s daughter, Cadence, was diagnosed with Prader-Willi syndrome (PWS) at just four weeks old, she was handed a long list of “cannot”s — things her daughter might never do. But

Standards of Care for Children and Adults with PWS [2021 CONFERENCE VIDEO]

December 20, 2021

In this 1-hour video, Dr. Jessica Duis, Clinical Geneticist from Children's Hospital Colorado explains standards of care for children and adults with PWS. The session includes Q&A from participants in the 2021 FPWR Virtual Conference. Click below to watch the

Standards of Care for Children and Adults with PWS

Standards of Care for Children Ages 0-2 With PWS [2021 CONFERENCE VIDEO]

December 14, 2021

In this 1-hour video, Dr. Jessica Duis, Clinical Geneticist from Children's Hospital Colorado explains standards of care for children ages 0-2 with PWS. The session includes Q&A from participants in the 2021 FPWR Virtual Conference. Click below to watch the

FDA Committee Indicates Substantial Evidence Has Not Been Provided For the Effectiveness of Carbetocin as a Treatment for PWS

November 4, 2021

In a disappointing decision, a panel of independent advisers to the Food and Drug Administration has voted 12 to 1 suggesting that Levo Therapeutics has not provided substantial evidence of effectiveness for carbetocin nasal spray (LV-101) in the treatment of

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