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FPWR Blog

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PWS Registry Data: Dermatology [INFOGRAPHIC]

When it comes to dermatological or skin issues in PWS, the first things that may come to mind are sensitivity to the sun due to fair skin, and skin picking. However, there are a variety of additional skin-related concerns for individuals with PWS. Da...
June 17, 2020 Read More

Topics: Research

Top-line Results Announced for Phase 3 Trial Evaluating DCCR for PWS

Soleno Therapeutics has announced top-line results from the company’s phase 3 trial, DESTINY PWS (C601), evaluating once-daily diazoxide choline controlled release (DCCR) tablets for patients with Prader-Willi syndrome (PWS). The results of the study...
June 11, 2020 Read More

Topics: Research

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...
May 14, 2020 Read More

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, ha...
May 7, 2020 Read More

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...
April 30, 2020 Read More

Topics: Research

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

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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