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FPWR Blog

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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

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...
April 3, 2020 Read More

Topics: News

Tips for Staying Calm and Managing Anxiety During COVID-19 [PODCAST]

In our latest podcast, Lauren Schwartz-Roth, clinical psychologist and mom to a young adult with PWS, shares tips on how to stay calm and manage anxiety during COVID-19. To listen, just click above, or read below for a list of tips to start using tod...
March 23, 2020 Read More

Topics: Research

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...
March 16, 2020 Read More

Topics: News

Top-line Data From DESTINY PWS Study Expected First Half of 2020

Soleno therapeutics recently completed enrollment of their ongoing Phase III Clinical trial, DESTINY PWS, and is expecting to announce top-line data the first half of 2020. The study is evaluating once-daily Diazoxide Choline Controlled-Release (DCCR...
March 5, 2020 Read More

Topics: Research

PWS Registry Data: Tube Feeding [INFOGRAPHIC]

For parents of an infant with PWS, one of the first major challenges they face is feeding difficulties and having their baby consume enough nutrition and calories. Data from the Global PWS Registry shows that more than 75% of registry participants re...
February 25, 2020 Read More

Topics: Research

PWS Research Provides the Hope We Desperately Needed As New Parents

A special contribution by guest blogger Natalie Brenneman Evan emerged into the world lifeless and blue. I remember watching my husband shifting back and forth on his tiptoes behind the medical team working to resuscitate him. “It’s a boy!” he finall...
February 18, 2020 Read More

Topics: Stories of Hope

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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Covina, CA 91723

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