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FPWR Blog

Bearden Research Transforming Understanding of Mental Illness in PWS

Behavior and mental health issues are an important part of Prader-Willi syndrome (PWS). In particular, one of the most challenging aspects for families to face is the onset of psychosis (i.e., mental illness characterized by symptoms, such as delusio...

Topics: Research

Multidisciplinary PWS Clinic Opens At Vanderbilt University

A new multidisciplinary PWS clinic at Vanderbilt University provides comprehensive and innovative care of children and adults with PWS. The clinic will enable patients to see a variety of PWS specialists in one location, easing the burden on patients...

Topics: Research

I Turn to PWS Research for Hope, and to Other PWS Moms for Help

A special contribution by guest blogger Maegan Richard Maegan shared her story via our Stories of Hope questionnaire. How has your child exceeded your expectations? When Cade was born, he was so lifeless and fragile. He kept the doctors on their toes...

Topics: Stories of Hope

Schaaf Research Connects Missing MAGEL2 Gene to PWS Symptoms

Prader Willi syndrome (PWS) results when a set of key genes on chromosome 15 are missing and/or inactive. Figuring out the role played by each of these genes in PWS is a major goal for PWS research. One of the genes in the PWS region is called MAGEL2...

Topics: Research, SYS

Your Child Is So Much More Than a PWS Diagnosis

A special contribution by guest blogger Melissa Demand Melissa shared her story via our Stories of Hope questionnaire. How has your child exceeded your expectations? We were lucky that in NICU and through our geneticist, we only heard about what he w...

Topics: Stories of Hope

Will Vagus Nerve Stimulation Effectively Treat Behavior in PWS?

Vagus nerve stimulation (VNS) offers the possibility of a unique, non-pharmacotherapy for treating behavior in PWS, Prader-Willi syndrome. A small pilot study involving three patients with PWS has shown promising results, and next steps are already u...

Topics: Research

Your Child Can and Will Have Successes You Can Barely Imagine

A special contribution by guest blogger Dan Yashinsky Dan shared his story via our Stories of Hope questionnaire.

Topics: Stories of Hope

What I Wish They Had Told Me About PWS

A special contribution by guest blogger Amber Rector The day I found out I was pregnant, I imagined myself carrying to term, pushing out a healthy baby and going home the standard two to three days later. I would arrive home with my new bundle of joy...

Topics: Stories of Hope

Cell Culture Model Used to Study How PWS Genes Regulate Hormones

Hormones are little messengers that circulate in the body, carrying important information from one location to the next, and triggering the appropriate response to that information. Numerous hormone levels are altered in PWS. These include hormones t...

Topics: Research