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FPWR Blog

Once She Sets Her Mind to Something, Nothing Can Stop Her!

A special contribution by guest blogger Alice Shapley Our beautiful and amazing 7‑year‑old daughter Anna has Prader‑Willi syndrome (PWS). There are so many things for which I am incredibly, deeply proud of Anna, but today I want to talk about the rol...

Topics: Stories of Hope

FPWR Announces First Round of 2020 Grant Awards for PWS Research

  The Foundation for Prader-Willi Research announces our first round of Research Awards in 2020 totaling $912,251. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, ...

Topics: Research

Practical Tips for Behavior Intervention At Home

COVID-19 has made all of our homes feel a bit smaller these days... Living together 24/7 has surely whittled away at our patience and increased everyone's anxiety. In this webinar, Patrice Carroll, Director of PWS services at Latham Centers, gives ad...

Topics: Research

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 ...

Topics: News

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...

Topics: News

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...

Topics: News

Strategies for Managing PWS Related Behaviors During COVID-19

COVID-19 has made all of our homes feel a bit smaller these days... Living together 24/7 has surely whittled away at our patience and increased everyone's anxiety. In this webinar, Patrice Carroll, Director of PWS services at Latham Centers, gives ad...

Vision and Prader-Willi Syndrome

Although many symptoms of PWS are difficult to treat, impaired vision is a place where corrective lenses and/or surgery can make huge improvements. Data from the Global PWS Registry shows that the most common vision issues in PWS are nearsightedness,...

Topics: Research

At-Home Learning Strategies for Students with PWS During COVID-19

Most of us are not trained educators, yet with COVID-19 closing schools around the country and many of us are facing distance learning for the remainder of the school year. In this webinar, Elizabeth Roof, Senior Research Specialist at Vanderbilt Res...

PWS Clinical Trials Alert

In addition to our regular clinical trial updates below, we have two clinical trial announcements to share with you.  1. Millendo has shared that results from the Zephyr clinical trial do not show the significant improvements in hunger that we had al...

Topics: Research