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FPWR Blog

One Small Step for Lincoln: PWS Research Gives Me Hope

A special contribution by guest blogger Kristine Mosca There was nothing more exciting than to hear that we were expecting our fourth child. I had delivered three beautiful children already and felt more than ready to welcome our fourth baby into the...

Topics: Stories of Hope

Want to Make Friends? New Online Groups Build Social Skills in PWS

A special contribution by guest blogger Elizabeth Roof Elizabeth Roof is a Senior Research Specialist at the Vanderbilt Kennedy Center and directs six research programs with children and adults with rare genetic disorders including Prader-Willi syndr...

Topics: Research

LaSalle Gene Research Paves Way for PWS Sleep and Metabolism Therapies

Sleep disorders are common in Prader-Willi syndrome (PWS). These are associated with central and obstructive apnea, disrupted sleep, and excessive daytime sleepiness. But why exactly do individuals with PWS have abnormal sleep patterns? Dr. Janine La...

Topics: Research

Art Auction Combines One-of-a-Kind Art AND Support for PWS Research

4/17/2017 — Note: Bidding closed yesterday, but you can still see these beautiful pieces of art on Facebook! Twenty unique paintings are available to the highest bidders in a unique art auction benefiting the Foundation for Prader-Willi Research (FPW...

Topics: News

New Evidence Supports Benefits of Hippotherapy

A new study highlighted in Medical News Today further supports the benefits of hippotherapy with regards to behavioral tasks and cognitive development. Hippotherapy is the use of horseback riding as a therapeutic or rehabilitative treatment.

Topics: Research

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