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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

How to handle the news

Started by jaytone in General Discussions. Last reply by Lee 1978 Sep 22. 14 Replies

After years of my son being treated by a psychiatrist, turns out it is not a psychiatric problem but ALD.  Found out when it was suggested to have him tested since he is losing his memory.  He is 30 years old. Came back positive for ALD.   Each day…Continue

PICC Line Arm from Care + Wear

Started by Scott Orn in General Discussions Sep 4. 0 Replies

My good friend Chait Razdan started a company that makes arm bands that go over PICC Lines. You can customize the arm bands for a charity you want to support (hello Ben's Friends) or for a message you want to spread. It's a cool new medical product…Continue

Telemedicine Patient Education

Started by Ben in General Discussions Aug 31. 0 Replies

Hi, everyone.  Dr. Joan Leafman from AT Still medical school in Arizona asks to help spread the word about some research she is conducting.  The survey is about Telemedicine Sessions for Patient Education.   If you are interested the link is here …Continue

DO YOU SHOP ONLINE, ESPECIALLY AT AMAZON? YOUR USUAL PURCHASES CAN HELP BEN'S FRIENDS AT NO COST TO YOU!

Started by Ben in General Discussions Aug 25. 0 Replies

Amazon is running a new promotion for Amazon Smile, their program that gives money back to Non Profits. For instance, BensFriends.org (my nonprofit) received $52 from Amazon Smile our 1st month…Continue

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Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

Learn how others cope and be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Latest Activity

Scott Orn left a comment for Jamie Shin
"Hi Jamie - Huge welcome to the community! This is a great place! One tip, if you have specific…"
Saturday

Moderator
dancermom left a comment for Jamie Shin
"Welcome, Jamie, to this supportive community. Feel free to open a discussion to introduce yourself…"
Friday
Jamie Shin is now a member of Adrenoleukodystrophy (ALD) Online Support Group
Friday
chronmom and HCHRON are now friends
Oct 12
 
 
 

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Ben's Friends Monthly Newsletter - September 2014 Issue

Posted by Ben on September 24, 2014 at 9:34am 0 Comments

Just the Stats:

Communities: 38

Friends: 42,500+




In this issue…

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