FPWR Blog

Is Oxytocin for PWS Beneficial? An Overview of Research

Researchers are making progress in evaluating the potential therapeutic benefit of oxytocin for PWS. Here, we review some of the most prominent research studies in this area and their implications for PWS.

Topics: Research

A Ray of Hope: Families Share Why They Love the FPWR Conference

Attending a conference means being around people who get itthey understand the journey you have been on with your child, personally, and with the world. It’s like seeing your family when you attend the FPWR Family Conference. Everyone, whether a new parent or seasoned parent, are there to support one another and lift each other up. Don’t believe us? Then hear what attendees from our 2018 conference had to say:

Topics: News

Vanderbilt Clinic Founder Reflects on Filling the Gaps In PWS Care

This guest blog was contributed by Dr. Jessica Duis, Pediatric Geneticist at Vanderbilt University Medical Center and author of A Multidisciplinary Approach to the Clinical Management of Prader–Willi Syndrome.

One of the most common questions I hear is “Why did you decide to be a geneticist?” This is a relatively difficult question to answer. When I think about it, no one event comes to mind. It was a path set in motion from the time I was young and wondered how maternal environment impacted the outcome for a child. While there was a personal basis in this, it was not until later my curiosity transformed into a passion to make a positive impact on the lives of individuals with genetic disorders, particularly chromosome 15 disorders. I entered medicine to really make a difference and to me that meant make myself accessible and provide even the simplest of things to try to improve quality of life.

Topics: Research

Saniona Provides Update on Ongoing Phase 2a Study of Tesomet for PWS

Saniona recently published a press release with an update on their Phase 2a study of Tesomet for Prader-Willi syndrome. A member of the PWS Clinical Trials Consortium, Saniona is working with FPWR, PWSA-USA, leading PWS experts and other industry partners to identify and improve primary, secondary, and tertiary endpoints for PWS Clinical Trials. Saniona’s current Phase 2 study is being conducted in Europe and if successful, will be brought to the US. Read below for their recent press release.

Top 10 Reasons to Attend This Year’s FPWR Family Conference

The FPWR Family Conference takes place October 3-5, 2019, in New Orleans, LA. Here are the top 10 reasons you need to register now and be here!

Topics: News

FPWR 2019 Conference Speakers Announced

You won’t want to miss these speakers at the 2019 FPWR Family Conference this October in New Orleans, Louisiana.

Are you ready to join like-minded game-changers with direct access to the people, knowledge, and inspiration you need to help your child at the lowest price of the year?

Want to take home tangible ideas that you can work on with your child? 

Topics: News

Two Silver Medals: A Child's Achievement Inspires Strength and Hope

A special contribution by guest blogger Allison Shelton

Allison shared her story via our Stories of Hope questionnaire.

Topics: Stories of Hope

Schaaf-Yang Syndrome Research Plan 2019-2021


With the input of experts and parent advocates from the SYS community, a research plan has been developed to guide and accelerate SYS research over the next 3 years. The plan includes a brief overview of the ‘current state of research,' highlights current opportunities and needs, and identifies and prioritizes key research questions.

If you have a loved one with Schaaf-Yang syndrome, learn more about our SYS research plan and get involved as we work together to advance research towards treatments, and a cure for SYS. 

ConSynance Therapeutics, Harmony Biosciences Join PWS Clinical Trials Consortium

The Foundation for Prader-Willi Research is pleased to announce the addition of ConSynance Therapeutics and Harmony Biosciences to the PWS Clinical Trials Consortium.

Topics: News

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