Going to Great Lengths for Eva - Ronda Jensen, JayDee Lindeen, Mara Beard and Tara Christman
Thank you for visiting our page! We are excited to have you join us on our journey to promote awareness and raise desperately needed funds for the Foundation for Prader-Willi Research (FPWR). This year, FPWR has been awarded 15 runner’s bibs for the NYC marathon. The process for obtaining these bibs is very competitive and they are highly sought after in the racing world. FPWR held a lottery for the bibs open to anyone willing to raise $5,000 each for PWS research. In an effort to keep our fundraising evolving and demonstrate to our donors our devotion to this cause, Team Eva Grace, entered the lottery. As luck would have it, we were awarded 4 of the bibs! All four runners, Ronda Jensen, JayDee Lindeen, Mara Beard, and Tara Christman are thrilled and honored to be representing Team FPWR in the world’s number one marathon.
WHO IS EVA GRACE?
Eva Grace is an energetic, fun-loving, four-year-old who can make anyone smile. Eva loves puzzles and books. She loves caring for her baby dolls and laughing with her siblings. Eva is also a fighter. She battles everyday with the many obstacles that come with having Prader-Willi Syndrome including a painful, unrelenting, hunger. Eva always feels as if she is starving; as if she hasn’t eaten for days. She never feels full. This insatiable appetite creates an obsession with food that makes ordinary life impossible. Eva battles every day for an ordinary life; she strives for a normal childhood.
WHAT IS PRADER-WILLI SYNDROME?
Prader-Willi Syndrome (PWS) is a complex, genetic disorder resulting from abnormalities occurring on the 15th chromosome. Symptoms include severe hypotonia (low muscle tone), intellectual and physical delays, and behavioral challenges among others. The hallmark symptom is Hyperphagia, a painful, constant, unrelenting urge to eat. This coupled with a very slow metabolism often leads to life-threatening obesity. To date, there is no cure for PWS and no treatment for the associated Hyperphagia.
WHAT IS FPWR?
The Foundation for Prader-Willi Research is an organization dedicated to eliminating the challenges of Prader-Willi Syndrome through research. FPWR is advancing research toward understanding and treating Prader-Willi syndrome, with the goal of an eventual cure. 100% of the money raised goes directly to support research. To learn more about FPWR and the research that is underway, please visit their website https://www.fpwr.org/.
As a team, we are committed to raise at least $20,000 for PWS research in 2017. We hope you will support our efforts with a donation today as we go to GREAT LENGTHS to ensure one day Eva will LIVE LIFE FULL.