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Foundation for Prader-Willi Blog | News (4)

Our First 2021 Venture Philanthropy Investment: Aardvark Therapeutics

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.

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

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 New Drug Applicat...

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FPWR and PWSA | USA Announce Upcoming Meeting with FDA

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 the FDA staff and sha...

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FPWR and PWSA|USA Request FDA Apply Regulatory Flexibility

FPWR and PWSA|USA have submitted a petition letter to the FDA requesting them to apply regulatory flexibility and to review a New Drug Application for DCCR (diazoxide choline extended-release).

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Top 10 Reasons to Attend the 2020 Virtual PWS Family Conference

The FPWR Family Conference takes place October 6-9, and this year, it's virtual and free. Here are the top 10 reasons you need to be there!

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Car-aoke, Other Creative Fundraisers Fueled By Social Distance

During a time when much feels uncertain, one constant that we can count on is the never ending drive and tenacity of our PWS families and their desire to improve the future of Prader-Willi syndrome through supporting research.

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Bringing Joy During COVID-19 With Interactive Activities

With COVID-19 keeping many of us indoors and isolated from our friends and family, we are all seeking new ways to stay connected and spice up our days! A few innovative community members have shared fun activities they have found that allow them to c...

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PWS Genome Project Needs Crowdfunding

A new pilot project is seeking funding to map the genomes of 50 people with PWS and integrate that information with the Global PWS Registry data. This first-ever PWS Genome Project seeks to help researchers better understand differences in PWS sympto...

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Managing Repetitive Behaviors and Motivation During COVID-19 [WEBINAR]

COVID-19 has turned all of our lives upside down. These times can be particularly challenging for our loved ones with PWS who rely on routines and schedules. In this webinar, Elizabeth Roof, Senior Research Specialist at Vanderbilt Research Center, s...

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