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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

Our First 2021 Venture Philanthropy Investment: Aardvark Therapeutics

June 22, 2021

In support of our mission to advance the development of new treatments for Prader-Willi syndrome (PWS), FPWR announces our newest venture philanthropy investment in Aardvark Therapeutics. Aardvark Therapeutics is focused on the development and commercialization of small molecule therapeutics that

PWS Registry Data: GI Issues in Prader-Willi Syndrome [INFOGRAPHIC]

June 18, 2021

Individuals with PWS suffer from a variety of digestive and gastrointestinal issues (GI), some of which can lead to surgery. Here, we focus on data from the Global PWS Registry to provide information on the prevalence of gastroparesis (delayed stomach

Next Steps In PWS Advocacy

June 11, 2021

For more than a decade, FPWR has partnered with families and other PWS groups (PWSA|USA, IPWSO) to advocate for PWS treatments. We've worked diligently to build resources that address the FDA’s call for patient experience data, demonstrating high disease burden

FPWR and PWSA|USA Request Regulatory Flexibility & Review of NDA for Intranasal Carbetocin

June 10, 2021

In a continuation of our joint advocacy efforts supporting the full review of potential drugs for PWS, FPWR and PWSA | USA have submitted a petition letter to the FDA requesting that they apply regulatory flexibility and to review a

FPWR and PWSA | USA Announce Upcoming Meeting with FDA

June 8, 2021

With your support, FPWR and PWSA | USA have been granted a meeting with the FDA, which will take place via teleconference later this month. This small, non-public meeting will allow FPWR and PWSA | USA to connect first-hand with

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