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Foundation for Prader-Willi Blog | News

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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May is #PWSAwareness Month | We Have Your PWS Awareness Resources

On May 1 we are kicking off Prader-Willi Syndrome Awareness Month! Since 2010, PWS Awareness month has mobilized the PWS community to raise awareness and educate others in their communities and across the country.  Visit our PWS Awareness month page ...

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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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2020 FPWR Conference Speakers — Sneak Preview!

You won’t want to miss these speakers at the 2020 Virtual PWS Family Conference, October 6–9. Inspiration, hope, people who get it — that’s the 2020 Virtual PWS Family Conference! At this free virtual conference, you can join like-minded game-changer...

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Fundraising for PWS — Panel [2019 CONFERENCE VIDEO]

In this 45-minute video, Sarah Peden, Director of One Small Step and FPWR's Community Development Director highlights the success of the PWS community in raising funds for PWS research. Sarah and parents of children with PWS share how they've gotten ...

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FPWR Receives award from the Moriah Foundation to support the development of a Mental Health Guidebook for Prader-Willi Syndrome

The Foundation for Prader-Willi Research is excited to announce the receipt of a financial award from the Moriah Foundation which will be used to support the development of a Mental Health Guidebook for Prader-Willi Syndrome (PWS). Mental health and ...

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Levo Therapeutics Receives Fast Track Designation From FDA for Intranasal Carbetocin for the Treatment of Prader-Willi Syndrome

Levo Therapeutics has received a Fast Track designation from the FDA for intranasal carbetocin for the treatment of PWS. A Fast Track designation will expedite the review of carbetocin so that, if shown to be effective, the product will get to market...

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