A Nonprofit organization
for the fight against Adrenoleukodystrophy

(916) 784-7653
 

Annual Jordon Crespillo
Benefit Golf Tournament

 

 

 

 

 


 


 

 


Jordon CrespilloWhat is Adrenoleukodystrophy?

ALD is the acronym for a rare genetic disease called adrenoleukodysrophy. Due to its unique pattern of inheritance, and the fact that any individual may undergo random gene mutations, this horrible disease can make its devastating and often lethal appearance without any warning. ALD does not recognize racial, social, economic, or religious boundaries. It does, however, manifest preferentially in males.

It is commonly known, especially to Americans, as the Lorenzo's Oil disease, named after an Oscar nominated 1993 film, starring Susan Sarandon and Nick Nolte, which was based on one family's experience.

ALD affects boys and young men. In the childhood presentation, which is observed in 35% of ALD-positive individuals, it is usually diagnosed between the ages of four and ten years old.  They generally have a history of learning disabilities and/or a behavior  issue such as attention deficit disorder (ADD) or attention deficit hyperactivity disorder (ADHD) while in fact, insulating material in the boys' brains, the white matter (also known as myelin) is progressively being destroyed. The disease worsens over several years, and usually in less than two years from ALD diagnosis, the child will lose all cognitive, mental, and physical functions, and deteriorate into a vegetative state leading to death.

Adrenomyeloneuropathy (AMN)

In the adult onset, young men, in their twenties or thirties, begin to exhibit neurological based motor lesions in their extremities. These lesions progress over many years and are inevitably accompanied by severe handicap. In approximately one third of these patients the central nervous system also becomes involved. These young men undergo the same mental and physical deterioration as the previously described boys. The progress of the disease is slower, usually declining to a vegetative state and/or death in 3 to 5 years. There is no effective treatment for the adult onset of ALD, which is commonly referred to as adrenomyeloneuropathy (AMN).

Addison's Disease

Virtually all ALD positive males suffer from adrenal insufficiency also called Addison's Disease. In rare instances adolescent boys and older men are neurologically affected. Women, who are genetic carriers of the disease, may also manifest mild neurological signs.

To communicate with the Jordon Fund staff please call us at (916) 784-7653 and ask for Dallas, or send email.

   

The Jordon Fund
PO Box 1762
Loomis, CA 95650
Ph:
(916) 784-7653
Email

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