A Worthwhile Cause

CLICK HERE to read up on and donate to a very worthwhile cause!

"The Foundation for Prader-Willi Research was established in 2003 by parents of children with Prader-Willi syndrome (PWS). Today, FPWR is composed of parents, family members, researchers, and others who are interested in addressing the many issues related to PWS, including childhood obesity and autism spectrum disorders.

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research. High quality research will lead to more effective treatments and an eventual cure for this disorder. By working together, we intend to free our loved ones from the burden of PWS, allowing them to lead full and independent lives.

Prader-Willi syndrome (PWS) is a genetic disorder that occurs in approximately one out of every 15,000 births. PWS affects males and females with equal frequency and affects all races and ethnicities. PWS is recognized as the most common genetic cause of life-threatening childhood obesity.

PWS was first described by Swiss doctors Andrea Prader, Alexis Labhart and Heinrich Willi in 1956 based on the clinical characteristics of nine children they examined. The common characteristics defined in the initial report included small hands and feet, abnormal growth and body composition (small stature, very low lean body mass and early onset childhood obesity), hypotonia (weak muscles) at birth, insatiable hunger, extreme obesity and intellectual disability.

In recent years, the syndrome has been genetically characterized as an abnormality of chromosome 15, and definitive diagnosis is now based on genetic testing."

Posted: Aug 27, 2010 at 9:59 am / Email this »

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3 comments to “A Worthwhile Cause”

susieQ1 says – reply to this

1

When I was scrolling through your site, I was shocked to see this ad for Prader-Willi Syndrome! I can't thank you enough for posting this to your site as Prader-Willi isn't as well known as others. My nephew was born with PWS a year and a half ago, and before then, I had no idea anything like this existed. He is progressing well, and is absolutely the most precious boy anyone has ever seen. He can steal your heart with just a single smile. It is foundations like this that can help assist in the research to find a cure for PWS. My brother is struggling to pay all the INSANE medical bills and it will continue for my nephews life. Lets hope more info is continued to be put out there to help families struggling to give their precious child every opportunity in life. Sorry for the rambling, I was just so excited to see this!!!
Jennifer Pastiloff says – reply to this

2

so awesome. go perez. my nephew has this
xo jen
www.jenniferpastiloff.com
Renay Harp Compere says – reply to this

3

You are soo incredible to bring attention to this amazing but little known Foundation. My beautiful 5 year old has PWS and so far he is doing really well. However, we know one day he will wake up hungry and that feeling will last for the rest of his life. I truly believe, as do many scientists we have worked, that when the puzzle of Prader Willi Syndrome is solved, so many who struggle with general obesity will benefit from the findings as well.

The Foundation for Prader Willi Research has done so much to help children like my little guy have the hopes of living a life without hunger.

Thanks again!!! You sooo rock.