Eric Scroggins via Crowdrise
January 06, 2012
BENEFITING: ADRENOLEUKODYSTROPHY FOUNDATION
EVENT DATE: Apr 28, 2012
As many of you are aware, my nephew recently passed away after a brave fight with ALD. Unfortunately, his younger brother, AJ, is also afflicted with the same cruel disease. I am running in the Scenic City Half Marathon in Chattanooga on February 25th and the Country Music Marathon in Nashville on April 28th in an effort to raise awareness of the disease and as a tribute to David. Donations will benefit the Adrenoleukodystrophy Foundation and are 100% tax deductible
Adrenoleukodystrophy, or ALD, is a rare genetically determined neurological disorder that affects 1 in every 17,900 boys worldwide. Those affected develop normally until the onset of symptoms occurs, typically between the ages of 4 and 10. Symptoms can rival those of attention deficit disorder before serious neurological involvement becomes apparent. The symptoms progress rapidly and lead to a vegetative state within two years, and death anytime thereafter.
The disease received some recognition after the 1992 movie "Lorenzo's Oil" with Nick Nolte and Susan Sarandon; however, the disease is relatively unknown to most people. First discovered in 1923, the disease continues to receive little recognition or funding primarily because there is not enough profit for big pharmaceutical companies. AJ is currently undergoing a clinical trial for treatment with Lorenzo's Oil at Johns Hopkins University in Baltimore, however, Johns Hopkins has relied on a grant from the National Institutes of Health for years and it was not awarded this past November. There is a very good chance that the trial will end this September leaving AJ with no other means of obtaining the treatment since Johns Hopkins is the only place worldwide administering Lorenzo's Oil.
We are currently working with the Adrenoleukodystrophy Foundation to explore cell therapy and gene therapy options that might provide answers that the oil could not. Your donations to this worthy cause are appreciated by our family and the families of all young boys suffering from ALD.