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Foundation for Prader-Willi Blog | Research (22)

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How Patients Can Partner to Speed Treatments for PWS [WEBINAR]

On May 15, PWSA-USA and FPWR jointly presented the webinar How Patients Can Partner to Speed Treatments for PWS. The webinar provided important information about PWS clinical trials including: what to expect when participating in a trial, what questi...
May 22, 2018 Read More

Topics: Research

Dr. Elisabeth Dykens Receives Rare Impact Award From National Organization for Rare Disorders

FPWR congratulates Dr. Elisabeth Dykens, who was awarded last night with a Rare Impact Award by the National Organization for Rare Disorders. Dr. Dykens may best be known in the Prader-Willi syndrome (PWS) community for developing the Dykens Hyperpha...
May 17, 2018 Read More

Topics: Research

First Study Site Announced: DCCR for PWS Hyperphagia, Phase 3

Soleno has announced the opening of their first clinical trial site for a Phase 3 study of DCCR to measure the drug's efficacy for treating hyperphagia in PWS. That site is Seattle Children’s Hospital.
May 17, 2018 Read More

Topics: Research

FPWR Announces First Round of 2018 Grant Awards for PWS Research [VIDEO]

The Foundation for Prader-Willi Research announces our first round of Research Awards in 2018 totaling $615,000. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, ha...
May 10, 2018 Read More

Topics: Research

PWS Registry Data: Anxiety In PWS [INFOGRAPHIC]

Anxiety is a common challenge for our loved ones with PWS. Recently, we reviewed responses in the Global PWS Registry related to anxiety. According to registry respondents, anxiety is an issue for 48% of individual with PWS ages 10 and up.
May 8, 2018 Read More

Topics: Research

Clinical Trials 101: What You Should Know About PWS Clinical Trials

It is an exciting time in PWS research, with multiple new clinical trials on the horizon this spring and through the end of 2018! There is already buzz throughout the community about upcoming studies, providing a wonderful opportunity for an open dia...
April 13, 2018 Read More

Topics: Research

Brain Tissue Donation: A Crucial Way to Advance PWS Therapies

FPWR is partnering with Autism BrainNet to collect and study post-mortem brain donations. Through this partnership, we aim to raise awareness about the importance of post-mortem brain donation, streamline the donation process for families, and enhanc...
April 10, 2018 Read More

Topics: Research

Diazoxide Reduces Body Fat In Mice Lacking PWS-Region Gene

Many thanks to Dr. Wevrick for contributing to this blog. A newly published study has shown that mice taking a diazoxide treatment lost weight, and that this occurred even in mice lacking the PWS-region gene, Magel2. The study, which is the first lon...
April 3, 2018 Read More

Topics: Research

PWS Places High Burden on Caregivers, New Publication Reports

PWS places a high burden on caregivers, impacting many aspects of their lives, according to a new publication in PLOS. The publication, High Levels of Caregiver Burden In Prader-Willi Syndrome, is the first stemming from the work of the PWS Clinical ...
March 29, 2018 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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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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