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.
Yesterday was the 5-year anniversary of Ellie's diagnosis with LBSL. It was the day we first heard those 10 awful words: "Leukoencephalopathy with Brainstem and Spinal Cord Involvement and Lactate Elevation." Those words changed our lives forever. Five years from now we hope to say that we have found a cure for her disease, but only God knows what the future holds. Until then, we will keep fighting and praying for that cure everyday. And most importantly, we will thank the Lord for the little things and the precious moments we do have!
Thank you Tasha McGinn and Ginger Gregory Loper for letting your daughters raise money for Ellie's cure. So grateful and blessed to have you in our lives. Love you both. #cureLBSL
A Cure for Ellie with Adam Temple and 2 others.
Some pretty amazing friends we have in Adam Temple and his wife Rachel Veazey Temple. Their mad BBQ skills won them 1st prize at the annual Waynewood Recreation Association BBQ Cook Off last night and they gave their $500 winnings to Ellie! This money goes A LONG WAY to keeping the daily #cureLBSL research efforts going in the laboratory at the Kennedy Krieger Institute. Love you guys! No idea you were such talented chefs:) Thanks to your equally talented team mates Mike, Tim, all you great guys and gals - congrats and thank you! Sorry we drank all your beer. Next year we will know to bring our own cooler.
- @thetemple Thnx for supporting my #cureLBSL research project with your mad BBQ skills. You & Rachel are the best. t.co/nUkQq064Rh
- @JordanKivitz look at what happened to the little cabbage sprout you gave me! t.co/PkEvA2o34W
- Thnx @KennedyKrieger for showing us your work to #cureLBSL Amazing place w/ amazing talent. We will keep raising💰 t.co/gkXnz5BBr1
- @SmithsonianSMS thank you for an amazing adventure and enriching my life w/ marine knowledge. ❤️ u guys so much! t.co/GjQQ5O6vaF
- @MamasDonutBites your deliciousness is a reward for good behavior at church on Sunday. Now a weekly tradition😋❤️ t.co/alnwp6Emmh
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A Cure For Ellie is an organization dedicated to finding a cure and creating awareness for Mitochondrial Disease. The organization is named for Ellie McGinn, a 6-year old girl in Virginia who was diagnosed in September of 2011 with Leukodystrophy-LBSL – an extremely rare degenerative brain and spinal cord disease for which there is no cure and little understanding. Ellie’s family and friends launched ACureForEllie.org in September 2013 to raise funds, spread awareness, and provide some answers for families that encounter this terrible diagnosis. The funds raised will be distributed to other 501(c)(3) organizations dedicated to supporting “mito-kids” and their families, and to medical organizations such as Johns Hopkins University for continued research in this field.
To contribute and help the children affected by Mitochondrial Disease, please make a tax deductible donation at Kennedy Krieger or send a check made out to A Cure For Ellie – 4414 36th St. S. – Arlington, VA 22206.