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.
Let's hope the people at the fortune cookie factory are right about this one:)
Research Update: We recently heard from the scientists conducting the LBSL research project. The mouse acquired from Germany is breeding. We are now into the second generation. If the next set of mice live - we will have successfully replicated Ellie's genetic mutation and the real work (God willing) can begin. The next 30 days will be crucial. Thanks to all who have made this monumental effort possible through prayers and donations. You know who you are:) We are so very, very grateful. May God bless you. We will continue to keep you updated.
A Cure for Ellie added 2 new photos.
We are so grateful to Mary Keller Quattlebaum and her son Kyle for hosting a lemonade stand in their neighborhood yesterday. They gave away free lemonade and asked for donations to Ellie's foundation. They raised $232 for #acureforellie ! Kyle (pictured here with Ellie) is her oldest and dearest friend. Not too long ago they were running around the backyard together in their diapers, and in the blink of the eye they are now 8-years-old selling lemonade. ❤️ This is actually a really cool way to help us raise money, as we are up against another big deadline for funding research at the Kennedy Krieger Institute in Baltimore that we hope will save Ellie's life. The project is described here: http://supportus.kennedykrieger.org/site/TR?px=1232148&fr_id=1070&pg=personalSo if you were looking for a way to help us but weren't sure how - please consider doing what the Qauttlebuams did! These types of things really do add up and can help us reach that goal of $231,000 by this December!
- @MamasDonutBites your deliciousness is a reward for good behavior at church on Sunday. Now a weekly tradition😋❤️ t.co/alnwp6Emmh
- RT @deOlazoClass: Thank you Mr R and Mr C, PTA, staff and parents for another spectacular field day! @AbingdonGIFT @Abingdon2nd https://t.c…
- Thanks @AbingdonGIFT @AbingdonPE for an awesome field day 2016! t.co/7NVQ4ibAu3
- RT @deOlazoClass: @HomeDepot Students loved building Father's Day @AngryBirds birdhouses. Thank you! @AbingdonGIFT @Abingdon2nd https://t.c…
- Ready for summer reading thnx 2 the @AbingdonGIFT @literacyladytoo @ReadingRube #goforthegold t.co/yVhtYesIur
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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.