Tuesday, July 6, 2010
I recently joined UMDF, and have been receiving newsletter updates. One of the latest announced an upcoming event in Chicago - a 5K walk called Energy for Life Walkathon. Since my family lives in Utah, we are much too far away from Chicago to participate, but I wanted to know more. I went to the website and saw that other areas had their own Energy for Life Walkathon, but I could not find one for our area.
I couldn't find a way to stop thinking about the event, either. I decided to begin organizing one in our area. I don't have time to have it this fall like the other walks that are planned, but figured I could get going now for next year. When I looked at the calendar to decide which day would be best, I felt that Saturday, September 10, 2011 would work best. Why?
UMDF is focusing on September to have states across this country set aside a week for awareness of Mitochondrial disorder. Most of the other walks organized are being held in September primarily for this reason. Dominic and Bridget both died in September. Both had their crisis events in September. They both had their events on the 2nd Saturday in September (9-8-01 and 9-8-07), and the 10th will be the 2nd Saturday in September next year. Both of them were in the PICU on September 10th, the anniversary of my Grandma's death, who died on September 10th the year I was born (I was just days old when she died). And all these reasons plus the sheer coolness of the date 9-10-11 make it the most logical day to have this event.
We still don't know if Dominic and Bridget died from a Mitochondrial disorder/disease. We don't know if others in our family (and even I am starting to have some worrisome symptoms) are affected by mito disease. But until there is more research done, diagnosing or ruling out the diagnosis will make families like mine continue to merely hope for an answer, while those with a diagnosis are left waiting for a cure and even FDA approved treatments. There are many good reasons to bring awareness to UMDF and Mitochondrial disorders, so even if someday we learn that our family was not actually impacted with a mito condition, it is still a worthwhile endeavor.
If anyone reading this is interested in joining our committee to organize an Energy for Life Walkathon here in Utah, please join us on Facebook.