Expedition Awareness
 
Adrenoleukodystrophy X-ALD, is a genetically determined neurological disorder. The presentation of symptoms occurs between the ages of 4 and 10, and affects the brain with demyelination. Demyelination is the stripping away of the fatty coating that maintains nerve pulse integrity. This process causes neurological deficits, including visual disturbances, auditory discrimination, impaired coordination, dementia, and seizures. Boys develop normally until the onset of symptoms occurs. Symptoms typically rival those of attention deficit disorder before serious neurological involvement becomes apparent. The symptoms progress rapidly and lead to vegetative state within two years, and death anytime thereafter.
STOP ALD
Informative Links. stopald.org aldfoundation.org fightald.org want to get involved? Information Sharing Volunteerism Donation Campaigns Purchase official EA GEAR Comments/Questions? e-mail 940.228.4543 http://www.stopald.orghttp://www.aldfoundation.orghttps://www.fightald.orgmailto:philgolden@expedition-awareness.org?subject=Questionsshapeimage_4_link_0shapeimage_4_link_1shapeimage_4_link_2shapeimage_4_link_3
AWARENESS
 
To be listed as a rare disease in the United States there should be less than 200,000 active cases at any given time. X-Adrenoleukodystrophy (X linked ALD) affects 1 in 17,900. That statistic does not sound that “rare” - but we must reference what is defined as rare. There is no viable treatment and no cure. Most boys will pass by the age of 12 or 2 years after onset of symptoms.

Rare - but not rare enough.

What is Lorenzo’s Oil?

If you have heard of ALD, then it was most likely due to the steadfast work done by the Odone’s to find a treatment for their son Lorenzo. This was depicted in a Hollywood production called Lorenzo’s Oil. The Odone’s efforts to find a treatment for ALD are nothing short of heroic. But a 2001 case study determined that Lorenzo’s Oil may or may not be beneficial. Unfortunately the jury is still out. We have not decided if we will apply for the study which is the only way to have access to the oil. Participants are thoroughly screened as well - so there is no guarantee that an X-ALD child could even have access. http://www.medicine.ox.ac.uk/bandolier/booth/neurol/lorenz.htmlshapeimage_10_link_0

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Why do this?  Brooks’ Story Diagnosed 2010  Sawyer’s Story Diagnosed 2002  Dalton’s Story Diagnosed 2008Brooks.htmlSawyer.htmlDalton.html