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Research (18)

PWS Registry Data: Anxiety In PWS

May 8, 2018

Anxiousness is a common challenge for our loved ones with PWS. Within the Global PWS Registry, caregiver-reported anxiety is an issue for 61% of individuals ages 10-14, and rises to almost 75% for individuals 15 and older. Caregiver-reported data from

Brain Tissue Donation: A Crucial Way to Advance PWS Therapies

April 10, 2018

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 enhance the collection and distribution

Diazoxide Reduces Body Fat In Mice Lacking PWS-Region Gene

April 3, 2018

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

PWS Places High Burden on Caregivers, New Publication Reports

March 29, 2018

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

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Hip Dysplasia in PWS May Be More Common Than Thought, Study Suggests

March 27, 2018

Many people with PWS have at least one orthopedic (bone/muscle) problem. A recent paper examines the how often hip dysplasia occurs in children with PWS (spoiler alert — it may happen more often than was previously thought), and offers new

Study Compares Schaaf-Yang and Prader-Willi Syndromes

March 14, 2018

Dr. Christian Schaaf and his group, in collaboration with Dr. Jennifer Miller, has published a new study examining clinical similarities and differences between Prader-Willi syndrome (PWS) and Schaaf-Yang syndrome (SYS). Dr. Schaaf was the first to describe SYS, which is

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PWS Registry Data: Vomiting and Choking in PWS [INFOGRAPHIC]

February 22, 2018

The inability to vomit has previously been cited as a characteristic of Prader-Willi syndrome. While there is a reduction in vomiting as compared to neuro-typical peers, 54% of participants in the Global PWS Registry have vomited (n=304) indicating that it

Dr. Nectow Researches Role of DRN Brain Region and Hyperphagia in PWS

February 2, 2018

Researchers throughout the world are hard at work trying to identify the biological mechanism(s) that drive hyperphagia (excessive eating) in PWS. One of these scientists is Dr. Alexander Nectow at Princeton Univeristy. Dr. Nectow's group studies a region of the

PWS Clinical Trials Consortium: 2017 Update

December 14, 2017

The PWS-Clinical Trial Consortium (PWS-CTC) combines the expertise and perspective from multiple disciplines and stakeholders, bringing together members of academia, industry, and patient organizations from around the world in order to address the unmet needs of clinical trials. PWS-CTC was

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