About Mitochondrial Disease
Mitochondrial disease comes in many forms and affects many parts of the body. Every 30 minutes a child is born who will develop a mitochondrial disease by age 10. But very few doctors in the world know how to spot or treat it.
While mitochondrial disease was identified in the 1960’s, its role as an underlying cause of diseases such as autism, epilepsy and organ failure in children has only recently been explored by a handful of doctors who are making new strides every day.
Exact numbers of those affected are unknown because so many children are misdiagnosed or go undiagnosed, but mitochondrial disease is approaching the frequency of childhood cancers.
About Ellie’s Particular Disease – LBSL
LBSL is a degenerative brain and spinal cord mitochondrial disease. LBSL is a rare genetic disorder that does not allow those afflicted with it to produce a protein essential for production of myelin, a critical substance for proper functioning of the brain and nervous system. Myelin provides insulation – much like the plastic coating around the wires in your home. It is also essential for transmission of signals from the brain to the rest of the body. Almost all cells in the body have mitochondria, which are tiny “power plants” that produce 90 percent of the body’s essential energy. Mitochondrial disease means the power plants in Ellie’s cells do not function properly. When that happens, some functions in the body are not able to perform at adequate levels. Organs that require massive amounts of energy, such as the brain, are often the most affected. Unfortunately, like many Leukodystrophies – there is currently no cure for LBSL.
Finding a Cure
While there is no cure for LBSL, Ellie’s friends and family are not without hope. They plan to support research that, with God’s help, may one day lead to a breakthrough and eventually a cure for LBSL and other types of childhood Leukodystrophies.
Hi Y'all....our race made the cover of "Arlington Connection" magazine! Thanks to Ellie's PE teacher Joe Reed, the school's teachers, the Fairlington Citizens Association, Joe Hartman and many others who brought us all together for good cause. What a wonderful community we have! http://connection.media.clients.ellingtoncms.com/news/documents/2015/04/14/Arlington.pdf
Thank you all for participating in the Fairlington 5K on Saturday! It was a huge, huge success! Over 400 runners and many more online supporters from across the country. Here is a link to the race results:http://www.zippyraceresults.com/search.php?ID=4782
- RT @AsmDaveRible: As a spnsr of Emma's Law it was nice to join Jim & Jill Kelly w @HuntersHopeFDN to benefit CHOP Leukodystrophy Center htt…
- Thnx @RareAdvocates 4 inviting my mom to the congressional briefing. You've made amazing progress 4 kids like me. t.co/X351z14dT6
- RT @RareAdvocates: Thank you Representatives Upton & Lance for taking part in today's Rare Disease Congressional Caucus briefing!... http:/…
- Thnx @zoos_aquariums for visiting Cap Hill. My mommy took me took me to see all the cool animals. t.co/Zh6Gb0cE9S
- RT @AbingdonSTC: #morningduty #groupie #AbingdonES @AbingdonPR @GreenMusic88 t.co/sy7JxU4rrC
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To contribute and help the children affected by Mitochondrial Disease, please make a tax deductible donation at ACureForEllie.org or send a check made out to A Cure For Ellie – 4414 36th St. S. – Arlington, VA 22206.