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FPWR Blog

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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...
April 22, 2020 Read More

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...
April 17, 2020 Read More

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...
April 16, 2020 Read More

PWS Registry Data: Vision [Infographic]

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,...
April 15, 2020 Read More

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...
April 10, 2020 Read More

Harmony postpones enrollment for phase 2 study of Pitolisant in PWS

An Update to the Prader-Willi community from Harmony Biosciences: As you may know, the team at Harmony has been working toward initiating a Phase 2 clinical trial to assess the safety, efficacy and appropriate dosing of pitolisant in treating some of...
April 8, 2020 Read More

Fundraising for PWS Research Has Empowered Our Family

A special contribution by guest blogger Felicia DiMuccio Growing up, I was never quite sure what I wanted to be, but I always knew I wanted to be a mom. Finding out I was pregnant with Siena was a dream come true, and I couldn't wait for her to enter...
April 8, 2020 Read More

Topics: Stories of Hope

Millendo Discontinues Livoletide Program for PWS

Today we received disappointing news from Millendo in regards to their Phase 2 study of Livoletide in PWS (Zephyr). Unfortunately, results from the trial do not show the significant improvements in hunger that we had all hoped to see and Millendo has...
April 6, 2020 Read More

Advice for Caregivers During COVID-19 [PODCAST]

In our latest podcast, Patrice Carroll, Director of PWS Services at Latham Centers in Cape Cod, shares how to how to help our loved ones with PWS through this unusual time of social distancing and isolation due to COVID-19. To listen, just click abov...
April 6, 2020 Read More

Topics: Research

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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Our Mission

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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