Prader-Willi Syndrome Research Fund

Fund Purpose
Support clinical research studies for children/adults with Prader-Willi Syndrome.

The Prader Willi Syndrome Research Fund was started by a family who wanted to celebrate the first birthday of their daughter, Everly Grace, and in appreciation to the care teams at UF. Now, this fund is an avenue for many families, friends and community members to support some of the exceptional research efforts surrounding PWS at UF Health. The original note that helped start this fund can be seen below.

September 16, 2016 my daughter, Everly Grace, was born. Within an hour of her being born, we noticed something was wrong. Everly had low muscle tone, had no desire to eat, and was very sleepy. After 3 weeks, we got the diagnosis of Prader Willi Syndrome (PWS). There are several medical issues that go along with PWS, but the hallmark sign is the constant feeling of hunger despite already eating. Everly is in the beginning stages of PWS and does not present with hunger issues. Instead, it is the opposite, she does not have the desire to eat but eventually the brain just does not register being full which could lead to obesity issues. I had to find Everly the best possible care and then I found Dr. Miller. She is an endocrinologist that specializes in PWS and I have never met a doctor as passionate and caring as her. She gave us the hope we needed. Everly is currently doing AMAZING! She’s eating more and her strength has improved tremendously. I am so proud of how hard she works everyday and I know that in the long run she will do amazing things and live a normal life like her sister. 

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