Earlier in January, one family set out to raise funds and awareness for Prader-Willi Syndrome (PWS) through a grassroots initiative, “Running for Research.”
Prader-Willi Syndrome is a rare genetic disorder that occurs in approximately one out of every 15,000 births. It is a complex condition that affects many areas of development, including growth, metabolism, cognition and behavior. Onset hyperphagia, a constant and unquenchable raging hunger, is the main symptom that keeps most individuals with Prader-Willi Syndrome from becoming independent.
Through “Running for Research,” participants joined together in their efforts by running the Disney Half Marathon at Walt Disney World earlier this year. All money raised through their fundraiser directly benefits the PWS research fund at UF Health. Led by Jennifer Miller, M.D., a pediatric endocrinologist at UF Health, the PWS program is one that directly impacts PWS patients and their families in multiple ways.
One participant has been taking her 6-year-old daughter to Dr. Miller for more than four years. She said that she found this fundraiser via Facebook and felt it was the perfect opportunity to combine her “passion for running and desire to increase research to improve what the future looks like for her daughter and others like her.” She added, “It was incredibly rewarding to see a group of people form all different walks of life come together to support a great cause.”
“Running for Research” participants raised more than $19,000 for the PWS research fund at the University of Florida.Their efforts will continue next year during Disney Marathon Week in January 2020. New next year: All PWS teams will be captained by Dr. Miller, and training plans created by Tammy Buck, a professor of physical therapy at Brenau University will be available for next year’s participants
For more information on “Running for Research” and their efforts, visit their Facebook page for the latest updates.