Day #8 of PWS Awareness Month 2013


Day #8 of Prader Willi Awareness Month…. Wednesday. On Wednesdays Siena goes to school with her sisters and while there receives Physical Therapy and Occupational Therapy all before 10am. Three Wednesdays ago our 3 brave little girls, Isla (5), Siena (3) and Lucca (7 months) participated in the PWS Sibling Study at Shands Hospital for Children at the University of Florida. (see photo) This study is led by two of the leading doctors and researchers of Prader-Willi Syndrome, Dr. Jennifer Miller (Endocrinologist) and Dr. Daniel Driscoll (Geneticist).

Without research such as this, the advancements that have been made for Prader-Willi Syndrome would not be where they are today. We would not know what therapies our kids needs, how to follow a safe and healthy diet, what medications to give or how to give our children the best lives possible.

We raise awareness in hopes that we can get the word to those that can help to make a difference, we raise funds so that those that can make a difference have the resources to do so. This is why we like to ask you save the date of JULY 14, 2013. We will be hosting A Charity Wine Festival with all proceeds benefiting PWS Research. Event tickets will be on sale soon, we are currently hoping to find sponsors and silent auction donations. Please let us know if you are interested – – thank you!!!!

Savor the Sip
“Local Love Cures”
A Food & Wine Festival to benefit the Foundation for Prader-Willi Research.

When: July 14, 2013, Sunday
Where: The Vineyard at Hershey
Food pairings, theme and design by The JDK Group

Mark your calendars now!! More details coming very soon!!!!!


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