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Over $10 Million Raised for Rare Syndrome

Over $10 Million Raised for Rare SyndromeOver 100 Research Grants funded since 2003 to help those living with insatiable hunger.

One Small Step held its inaugural Estero event to fundraise and advocate for The Foundation for Prader-Willi Research. Over 100 people from all over the state attended to together for a family-friendly day of fun. The event took place at Estero Community Park on Sunday, February 17, from 9am-1pm It featured live entertainment, face painting, kids crafts, food trucks, obstacle course, raffle, silent auction and more! The event raised a total of $13,900 for the Foundation for Prader Willi Research. The Foundation for Prader-Willi Research, a 501(c)3 charitable organization, which is urgently working in funding research to advance treatment options, eliminate challenges, and find a cure for hunger. To date they have funded more than $10M in PWS research & 100% of funds raised from this event go directly to this research.

Prader-Willi Syndrome (PWS) is a rare, non-hereditary genetic disorder that encompasses a wide range of medical and developmental issues. It is complex, life-threatening and there is no cure. The most challenging symptom those with PWS face is chronic hunger. The unrelenting, physiological drive to eat. PWS effects the hypothalamus, tricking the brain into thinking the body is starving…all the time. The parents organizing this event feel a deep responsibility to accelerate fundraising efforts to support as much quality research as possible.

There are over 100 people in Florida living with Prader-Willi Syndrome. These are the faces of a few locally, the ones who inspired this local event. From Left to Right: Claire, Isabella, Devin & Preston.

Learn more about Prader-Willi Syndrome at www.fpwr.org
Media Contact:
Claribel Bocanegra – One Small Step Host
p: 239-839-8774 / e: advocate4child@gmail.com

The Foundation for Prader-Willi Research, One Small Step www.fpwr.org

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