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.
A Cure for Ellie added 2 new photos.
Today, thanks to a long-time family friend, Ellie was able to see and hear the Pope speak to the American people from the Speaker's Balcony at the Capitol. One of the first things that Pope Francis did when he came outside was to bless all the children. This was an incredible opportunity and we feel so lucky that both she and her sister were able to experience it. But it's not just about Ellie - it's about the other kids who have this disease and their parents. A blessing on Ellie is a blessing for them all - we pray.
Last night we accepted a check for $11 THOUSAND DOLLARS!!!! to a Cure for Ellie from the 2015 Fairlington 5K Race Organizers which many of you came out for in April. Thank you Joe Reed, Principal Uyeda, Vice Principal Seligson, and FCA President Guy Land! Thank you also to the Fairlington PTA, the fabulous teachers, the many generous people in the community, and our own network of friends and family that made this a reality. We raised $3K more than last year and we are closer to the $60K needed to start the research that we pray will save Ellie and other children with LBSL. God bless all of you!
A Cure for Ellie We also want to add that this event was the brain child of Ellie's PE teacher Joe Reed (pictured above - second in from the right) and without his vision and determination we would not even be in a position to be talking about research. Thanks Joe! The world needs more people like you.
September 18, 2015 at 12:22 pm13
Shop in Honor of Ellie - A portion of the profits from your Matilda Jane purchase will go to support Ellie! Simply create your wish list and email it to our dear friend Laura Allen. All the details are below. They make gorgeous girls clothing. Just in time for back to school! 1. Go to http://www.matildajaneclothing.com2. Click on "Our Collections," then click "Browse the Collections"3. Click the latest collection, "Friends Forever" or the new tween line 435(sizes range from size 8-14yr) 4. Sort the clothing according to your child's size using the "View By Size." This is up to date so if a piece isn't showing in your child's size, it isn't available in that size. 5. Add items into your "wishlist" (similar to adding items into a shopping cart) by clicking on that item. Once you have completed your wishlist, you can email it to:email@example.com. On your wishlist, please include your shipping and billing address along with a contact number because I will be following up for payment information. Be sure to enter TK ID #954 when ordering!!https://www.matildajaneclothing.com
- RT @clymerdc: Today on #MedicareMonday: What is ASP? (Not to fear, Cleopatra) t.co/x2whL3IseP t.co/jDWIVCQSGa
- RT @AbingdonGIFT: Thanks sponsors for supporting #AbingdonES @Fairlington5K. $11,000 to @Cure4Ellie! @Nationals @CopperwoodTav @GreatAmerRe…
- RT @AbingdonGIFT: Thx sponsors for supporting #AbingdonES @Fairlington5K. $11,000 to @Cure4Ellie! @VlgShirlington @BestBunsBreadCo @AhloveO…
- @Pontifex I heard you today. Thank you. I will pray for you. #love #mercy #faith t.co/8MUy8eeHD5
- Waiting for #PopeinDC #love #mercy #faith #healing #hope thank you God & @ELSchillinger t.co/UUVNVOkbXD
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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.