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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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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.
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
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
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
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
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Posted by Ben on August 31, 2014
DO YOU SHOP ONLINE, ESPECIALLY AT AMAZON? YOUR USUAL PURCHASES CAN HELP BEN'S FRIENDS AT NO COST TO YOU!
Posted by Ben on August 25, 2014
Added by Ben on August 26, 2014