PRADER WILLI SYNDROME (PWS)

Prader-Willi syndrome (PWS) is a rare non-inherited genetic disorder. Although the cause is complex, it results from an abnormality on the 15th chromosome. PWS occurs in males and females equally and in all races. About 1 in 15,000 live births will result in PWS. The disorder typically causes low muscle tone, short stature if not treated with growth hormone, and a chronic feeling of hunger. PWS is a spectrum disorder, which means that those affected with PWS will experience its symptoms to various degrees; however, all will share intense feelings of hunger, even after eating. The food compulsion makes constant supervision necessary.

At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia, which can lead to a diagnosis of failure to thrive. The second stage ("thriving too well"), has a typical onset between the ages of two and five, but can be later. The final stage, hyperphagia (extreme unsatisfied drive to consume food) usually begins between the ages of four and six and lasts throughout a person's lifetime. Current appetite suppressants on the market cannot alleviate these intense feelings of hunger. Children die every year from having their stomachs literally explode from eating binges caused by their effort to alleviate their hunger, and parents hear their children crying from hunger every night.

SPONSORSHIP

Kids Need Cures is currently seeking partners to help sponsor our fundraising events. This will be an incredible opportunity to support a worthy cause, get your brand in front of a highly targeted audience of philanthropic leaders from in and around the Los Angeles area, and have fun!

 

To learn more about our sponsorship packages, please contact us!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The International One SMALL Step walk series is a way for everybody in the PWS community to work together regardless of what country we live in or what organization we are affiliated with. We have all come together to achieve our mission: "To eliminate the challenges of PWS, through the advancement of research." One SMALL Step events are held in countries around the world with over 10,000 walkers participating each year in our events!

 

Please click here to learn more about this event.

 

 

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This generation we find a solution

Hi, my name is Caitlin. I'm like a lot of typical 4-year olds. I like puppies, playing with my brother, and looking at books. But I also have Prader Willi Syndrome, which means my life will be far from typical.

 

Will you help me find a cure?

KIDS NEED CURES

 

Prader Willi Syndrome (PWS) is a rare non-inherited genetic disorder of Chromosome 15 that creates intense feelings of starvation in those afflicted, severely impacts behavior and cognition, and generally causes a significantly reduced quality of life.

 

When our then-seven month old daughter Caitlin was diagnosed with PWS in July 2011, our hearts sank. Unfortunately, dated medical journal articles and research papers dominate the Google search results, and many of the sources we read seemed to suggest that Caitlin's case was relatively hopeless. We were devastated.

 

Fortunately, being the type-A personalities we are, we reached out to every leading physician and researcher to learn more about PWS so we could ensure the optimal outcome for Caitlin. We spoke with PWS families, and organizations such as the Foundation for Prader Willi Research, which was making great strides in figuring out the PWS puzzle. What we learned was that far from being hopeless, the strides being made by the PWS community in solving some of the more serious effects of PWS meant that Caitlin's future looked a whole lot brighter than we thought it might. New treatments such as growth hormone therapy, and promising potential treatments such as Oxytocin, meant that managing the impact of PWS might be possible. But we knew that like most rare disorders, PWS was terribly underfunded and suffered from a general lack of awareness. So we created Kids Need Cures, a 501(c)(3) corporation, to raise funds to support research that helps solve this terrible disorder, and improves the quality of life of PWS sufferers worldwide.

EVENTS

Children with PWS have sweet and loving personalities, but their increased appetite and motor development delays along with some behavior problems create unique medical issues that prevent them from being able to lead independent lives. We believe that finding a cure for hyperphagia will dramatically improve the lives of those with PWS.

 

For more information about Prader-Willi Syndrome and current research initiatives taking place around the disorder, visit our friends at the Foundation for Prader-Willi Research, a sister organization we support and partner with frequently.

SPONSORSHIP

EVENTS

JEANNINE KOWAL

PRESIDENT, KIDS NEED CURES

 

jeannine@kidsneedcures.org

 

(310) 663-3144