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If your family has been affected by Adrenoleukodystrophy (ALD), consider Adrenoleukodystrophy (ALD) Support Network your second home.

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What is Adrenoleukodystrophy?

Adrenoleukodystrophy (ALD) is a rare, genetic disorder that leads to brain damage and failure of the adrenal glands. It affects the body’s nervous system, causing the weakening and failure of the nerve impulse; thus leading to disability.

Adrenoleukodystrophy (ALD) is a disorder of peroxisomal fatty acid beta oxidation which results in the accumulation of very-long chain fatty acids in tissues throughout the body.  Clinically, ALD is a heterogenous disorder, presenting with several distinct phenotypes, and no clear pattern of genotype-phenotype correlation. As an X-linked disorder, ALD presents most commonly in males, however approximately 50% of heterozygote females show some symptoms later in life. Approximately one-third of ALD patients will present with the childhood cerebral form of the disease, which is the most severe form.

Forum

Carriers

Started by Penny Greenwell in General Discussions. Last reply by jaytone Dec 20, 2014. 1 Reply

Hi All, My name is Penny, we have an adult son that was diagnosed withALD after a traumatic brain injury.  Actually the brain injury became a blessing, through the many doctors and rehabs he went to, it was recommended that we look into ALD.  He had…Continue

CA Governor Jerry Brown Signed Bill to Screen Newborns for ALD September 2014

Started by dancermom in General Discussions Nov 25, 2014. 0 Replies

Governor Jerry Brown Signs Bill to Screen Newborns for ALD(September press release from the Myelin Project: http://www.pr.com/press-release/584040)Governor Jerry Brown signed Assembly Bill 1559…Continue

How is everyone?

Started by dancermom in General Discussions. Last reply by dancermom Nov 22, 2014. 8 Replies

It's been awhile since we have heard from some of you. Now is a good time to check in, say hello to our newer members, and tell us how you are and what is on your minds. I hope to hear from you soon.Continue

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Latest Activity

Scott Orn posted a blog post

Local Fundraiser for Ben's Friends

I wanted to share some good news from a local fundraiser we did last night in San Francisco. Some…See More
Sunday
Crystal Wilsey left a comment for Crystal Wilsey
"Thank you, i have struggled finding support in my home town or even state of Wisconsin. .. my son…"
Mar 20

Moderator
dancermom left a comment for Crystal Wilsey
"Welcome, Crystal, I am so sorry to hear you lost your son to ALD. It is a heartbreaking disease.…"
Mar 20
Crystal Wilsey is now a member of Adrenoleukodystrophy (ALD) Online Support Group
Mar 20

Top Content 

1 Local Fundraiser for Ben's Friends

Local Fundraiser for Ben's Friends

Added by Scott Orn on March 22, 2015

 
 
 

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Local Fundraiser for Ben's Friends

Posted by Scott Orn on March 22, 2015 at 10:09am 0 Comments

I wanted to share some good news from a local fundraiser we did last night in San Francisco. Some friends of mine wanted to support Ben's Friends so they held a "bar night get together for Ben's Friends."

It was a big success as we…

Continue

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