Tuesday, May 3, 2011

Please Join Our Efforts!

Utah's first Energy for Life Walk will be Saturday, September 10, 2011
9-10-11!
Ready to join us!?
Our site is up, and ready for you to join a team, or start your own! We aren't listed on the main page for Nationwide walks, but that is only because the fall walks haven't been added yet. Anyone who wants to start their own team in memory or in support of any individual/family affected by mito, or just because you want to - go to www.energyforlifewalk.org/utah. If you'd rather join an existing team, you can do that, too!

This is our family's team -


Our team name comes from the reaction of hearing a medical condition not many people have heard about. Then having gone to so many different doctors in all sorts of specialties, it is quite difficult to remember who you are seeing. Not to mention that we're fans of the BBC Doctor Who series, discovery, & learning about mitochondrial disease - so Mito What? Doctor Who? it is!

Please join us & support us as we work to increase awareness for mito, and help raise funds to improve testing and treatments. We'll likely add teams - one for Dominic and one for Bridget, as a reminder of why it's so important to focus on how this disease takes the lives of too many children.

"In childhood, mitochondrial disease is more common than muscular dystrophy or cancer." http://www.medomics.com/Mitodx


" The mortality rate among children with mitochondrial disease varies from 10 to 50 percent per year. Most children do not survive beyond their teen years."
http://www.umdf.org/atf/cf/%7B858ACD34-ECC3-472A-8794-39B92E103561%7D/talking_points.pdf

How many individuals are affected?
Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10. Each year, 1000 to 4000 children in the United states are born with a mitochondrial disease. While exact numbers of children and adults suffering from mitochondrial disease are hard to determine because so many people who suffer from mitochondrial disease are frequently misdiagnosed, we now know the disease is approaching the frequency of childhood cancers. Many are misdiagnosed with atypical cerebral palsy, various seizure disorders, childhood diseases and diseases of aging. Still others aren't diagnosed until after death

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