On Friday, September 20, we will serve as honorary event chairs for the Hope Flies Catch the Cure event to benefit the Foundation for Mitochondrial Disease. As you may know, our youngest daughter Ellie has mitochondrial disease and David serves on the Foundation board. Ellie, age 11, is currently living with mitochondrial disease, an energy-production problem primarily affecting the brain, body, and muscles at many different levels of severity.
In some ways, Ellie is like a typical kid–she has an easy and infectious giggle, she loves to splash in the pool, wrestle with her 14-year-old sister and watch The Sound of Music. However, this devastating disorder affects every part of her life and body. Unlike many children with mitochondrial disease, Ellie does walk, but a better description would be that she teeters, stumbles and careens. Ellie is nonverbal–she has a few signs and gestures and is very excited about her communication program on the iPad. Still, many days, even these gestures and words are hard for her to express. A child in Ellie’s class once said it best: “Ellie’s body doesn’t always do what she tells it to do.”
Ellie also suffers from seizures, muscle weakness and significant cognitive delays. However, Ellie wakes up every day smiling and whether she is trying to climb up a slide backwards or fit a puzzle piece into its proper hole despite her trembling hand, she works harder than anyone we’ve ever seen. While there is currently no cure and barely any treatment for this devastating disease, we are constantly inspired by Ellie’s determination and love for life.
It is our hope that you will consider attending this event and supporting the Foundation. All proceeds will benefit the Foundation for Mitochondrial Medicine. The event begins at 7:30 pm at the Mason Murer Fine Art Gallery and will include live dance music by the fun Yacht Rock Revue, dinner, open bar, silent auction and great raffle prizes. Tickets are $150 each and available at http://bit.ly/CatchtheCure2013.
While a cure for mitochondrial disease could impact cures for Autism, Alzheimer’s, Muscular Dystrophy and Parkinson’s, there are currently no effective treatments. The Foundation for Mitochondrial Medicine’s purpose is to support the development of the most promising research and treatments of the many, many forms of mitochondrial disease. The Foundation is funding a path to a cure and making connections to other related diseases.
Hope Flies Catch the Cure is an opportunity for you to learn about the foundation, mitochondrial disease and to support this cause that is so close to our hearts. Thank you in advance for your consideration and support.
Laura and David Green
Hope Flies Catch the Cure
2013 Honorary Chairs