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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.

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Sean Vitka & Blue Redefined Patient Organization Sponsors Ben's Friends

Started by Scott Orn in General Discussions. Last reply by dancermom on Wednesday. 1 Reply

Thrilled to announce that Ben's Friends received a $1,500 donation from Sean Vitka and Blue Redefined (http://www.blueredefined.org/), a non profit patient organization. It's incredible to be recognized by…Continue

Ben's Friend Partnership with PicnicHealth - Electronic Medical Records for Patients With Rare Diseases

Started by Scott Orn in General Discussions Jul 5. 0 Replies

A few weeks ago, my friend Noga Leviner told me she was building an Electronic Medical Records system for people with rare conditions. It's called PicniceHealth (…Continue

If You Could Choose 2 New Things For Your Support Group What Would They Be?

Started by Scott Orn in General Discussions Jun 27. 0 Replies

This post was written by Lovett, a Moderator on Fibromyalgia Support. Lovett is one of the 200+ Volunteer Moderators on Ben's Friends Support Communities. Rather than just posting this on the Fibromyalgia site, I thought every community would…Continue

Results from Ben's Friends Survey

Started by Scott Orn in General Discussions Jun 22. 0 Replies

Hi everyone, you'll recall that a couple of months ago, we asked all the Members of Ben's Friends to fill out a short survey about how Ben's Friends helps you. The survey was put together by a prestigious non profit consulting group called …Continue

Tags: survey

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Moderator
dancermom replied to Scott Orn's discussion Sean Vikta & Blue Redefined Patient Organization Sponsors Ben's Friends
"Thank you so much, Sean, for helping to keep our communities up and running."
Wednesday

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dancermom liked Scott Orn's discussion Sean Vikta & Blue Redefined Patient Organization Sponsors Ben's Friends
Wednesday
Scott Orn posted a discussion

Sean Vikta & Blue Redefined Patient Organization Sponsors Ben's Friends

Thrilled to announce that Ben's Friends received a $1,500 donation from Sean Vitka and Blue…See More
Tuesday
Scott Orn left a comment for lackovi
":)"
Jul 14
 
 
 

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First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

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June 2014 Community Newsletter

Posted by Ben on June 29, 2014 at 9:00am 0 Comments

Summer - the time of the year where some of our wonderful and fun memories are made. As a quote goes, "Life without love is like a year without summer."  Spend some time with your loved ones, enjoy the sights and sounds of nature and feel the…
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