Fitness for a cause bootcamp is back this saturday, and we are excited to support the Ellie White Foundation for Rare Genetic Disorders.
When Ellie was just 3 she was diagnosed with juvenile diabetes. By age 11 doctors confirmed that she had a genetic disorder called Wolfram syndrome, a rare genetic disease, so rare that chances of getting it are one in 700,000. When Ellie was diagnosed she was the only person with Wolfram syndrome in Colorado.
Wolfram syndrome causes blindness, hearing loss, and eventually it affects the brain stem, causing respiratory failure at an early age. With no current cure, the life expectancy of a patient is typically less than 30 years.
Despite all she has to overcome in her young life, Ellie remains a positive inspiration to many. Her dance group, The Silhouettes, came in second on "America's Got Talent" sixth season. She used this public platform to bring awareness to Wolfram syndrome. "Even though she's losing her hearing and vision, she can dance. On ‘America's Got Talent' even," Beth White, Ellie's mom said.
The Ellie White Foundation for Rare Genetic Disorders was created in 2012 by Beth White. As a researcher, Beth's goal is to raise enough funds to help build a lab where research can begin to find a cure for Wolfram syndrome and other rare genetic diseases. The first annual Ellie White Fund Raising event was held in Wilmington, NC in July of 2012 followed by an event in Boulder, Colorado, Ellie's home, in November 2012. The Foundation is dedicated to raising awareness of Wolfram syndrome and funding research to find a cure for Wolfram syndrome and other orphan diseases that receive little or no federal or private funding.