Over $10M Raised for Rare Syndrome – Next Stop, Estero

One Small Step is holding its inaugural Estero event to fundraise and advocate for The Foundation for Prader-Willi Research. Over 200 people from all over the state are expected to join together for a family-friendly day of fun. The event is taking place at Estero Community Park on Sunday, February 17, starting at 9:30. It will feature live entertainment, face painting, kids crafts, food trucks, obstacle course, raffle, silent auction and more!

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.

The Foundation for Prader-Willi Research, a 501(c)3 charitable organization, 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.

“This is a family friendly event intended to bring the community together to support those with PWS and their families. We are extremely excited at the overwhelming support we have received to make this a great day. Between the fabulous silent auction items that have been generously donated and list of fun activities that have been planned, we are confident and excited that the 17th will be great fun for all, and a successful event to benefit PWS research.” – Amanda Tokarski, event host.

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

Registration is free online at http://act.fpwr.org/Estero2019. Find us on Facebook Events!

Learn more about Prader-Willi Syndrome at www.fpwr.org.

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