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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

PWS Mom's Courage Grows as the Story of Her Daughter Unfolds

February 23, 2018

A special contribution by One Small Step host Bailey Beasley “Something came back on the microarray.” We had just landed after being care flighted to a large children’s hospital. We had been in the NICU in our hometown for two

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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

Dad Believes In an Amazing Life For His Son With PWS

February 16, 2018

A special contribution by Brian Kalasek My introduction to PWS was probably very similar to other PWS families. We were admitted to the NICU on day 3 of Paxton’s life. He hadn’t really “woken up” yet, but the nurses and

Two Moms, 5 Years and $1.7M for PWS Research

February 9, 2018

Becky McWilliams and Samantha (Sam) Chipetz are a force to be reckoned with! In addition to managing successful careers and juggling a family, therapy appointments and play dates, these two hard working moms have been fundraising for PWS research for

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