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FPWR Blog

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Long Term GH Therapy Improved Body Composition

Recent research out of Italy, reported in the Journal of Clinical Endocrinology and Metabolism, highlights the potential benefits of long-term growth hormone (GH) therapy in adults with PWS. The study, involving 15 obese adults with PWS treated with ...
February 12, 2014 Read More

Topics: Research

We Chose to Believe in a Bright Future for Our Son

“Happy 30th Birthday to you, Keegan Johnson, and, by the way, your son has Prader-Willi syndrome!” Although the news wasn’t delivered in song, that was what was presented to Keegan and Tanya Johnson on the day they planned to celebrate Keegan’s first...
February 12, 2014 Read More

Topics: Stories of Hope

Clinical Trials In Our Community: Oxtyocin, Here We Come!

By Emma Roth and Lauren Schwartz-Roth, FPWR Board Member Lauren Roth and her daughter, Emma, share their experience of participating in the Oxytocin Clinical Trial at Vanderbilt University. Join this duo through their journey and learn more about the...
February 11, 2014 Read More

Topics: Research

The Top Ten Reasons to Take One SMALL Step in 2014 !

Recently we asked members of our One SMALL Step facebook page to share their reason for hosting a One SMALL Step event. Here are their top ten reasons. Hosting an event is like teaching a school lesson....the one that often learns the most is the tea...
February 10, 2014 Read More

Topics: Research

Are You Ready For an Exciting Year?

2014 is starting with a BANG! Several new PWS clinical trials will be beginning around the country will be evaluating potential therapies for PWS for children and adults with PWS. The active involvement of our community will be critical to seeing the...
January 2, 2014 Read More

Topics: Research

Got baby teeth? Your child’s lost teeth could be the key to understanding neuronal changes in PWS!

Considering the complex neurological basis of PWS, one major hurdle in conducting PWS research is obtaining neurons, i.e. studying neurons without taking brain samples. Pluripotent stem cells are a phenomenal resource as they can be coaxed into becom...
December 9, 2013 Read More

Topics: Research

New York City Gala Raises $94,000 for Prader-Willi Research!

Over 260 people attended the 1st Annual New York City Live Life Full Gala held November 15, 2013 at the historic India House in lower Manhattan. The event included cocktails & hors d’oeuvres, food stations, live jazz, a silent auction and a live ...
December 1, 2013 Read More

Topics: Research

Are there benefits to testosterone replacement therapy in adult males with PWS?

One well established characteristic of PWS is altered development and function of reproductive systems. This can include hypogonadism; under-development of sexual organs, particularly the testes in males; precocious puberty; and infertility.
October 28, 2013 Read More

Topics: Research

A Game Changer for PWS Genetics

A fascinating new paper has turned PWS genetics on its head, and has important implications for understanding the underlying disruptions that cause PWS. As anyone who is familiar with PWS knows, the genetics of this disorder is very complex.
October 8, 2013 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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