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FPWR Blog

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A Beautiful Life: One Mother's PWS Journey from Fear to Hope

A special contribution by guest blogger and One SMALL Step host Rachael Petterson Every night, for several weeks following my daughter Mae’s birth, I stayed up late reading medical journal articles and studies. I was determined to figure out why Mae ...
April 28, 2017 Read More

Topics: Stories of Hope

Biomarkers and Beyond: 2016 Update from PWS Clinical Trials Consortium

Over the past several years, the PWS community has been fortunate to see several potential therapies for PWS enter clinical trials. To date, the only FDA-approved drug for the treatment of PWS is growth hormone, but it's clear that new medications ar...
April 27, 2017 Read More

Topics: Research

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...
April 21, 2017 Read More

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...
April 19, 2017 Read More

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...
April 14, 2017 Read More

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...
April 12, 2017 Read More

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.
April 12, 2017 Read More

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...
April 7, 2017 Read More

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...
April 5, 2017 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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Our Mission

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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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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