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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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BensFriends.org helps 80,000+ rare disease patients every month but until the IRS grants us 501c3 status, we can’t raise money from foundations and corporations. It costs about $2,000 a month to run the 30+ communities. In order to sustain our monthly operating costs, we called for members' donation campaign. Would you help us keep the miracle going at Ben's Friends? If you can, please visit our Donate page on this link.
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.
Good morning,I am a German grandmother of a four year old boy with childhood X-ALD. Actually the physicians are searching the data banks for a bone mark donor and we are waiting...I wish to get in contact to other grandparents, because I want to…Continue
In America, this Thursday is Thanksgiving. We spend the day thinking about what we are grateful for and also eating a lot of turkey and pie. :)I thought it would be fun to start a discussion on what we're all thankful for. I'll get it going:I'm…Continue
We’re so proud to announce the release of the Ben’s Friends iPhone App!!!
Go to the App Store and download it now. To help others locate the app easier and enjoy online support, don't forget to give the app a 5-star rate review. Strong reviews like 5-star help bumps up Ben's Friends in the Apple's search result.
In the App, you can access all 35 support communities through the site and it’s perfect for staying in touch with your friends, info and support while on the go. In our beta tests, patient reported using it in doctor office waiting rooms and right after they were given a new diagnosis. The next feature in the App will be portable doctor reviews!
Posted by Simone1963 on November 20, 2013
Added by Ben on December 6, 2013
Posted by Scott Orn on December 9, 2013
Added by Armando A. on December 8, 2013
Posted by mary on December 8, 2013
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Best of Ben's Friends is a collection of inspirational or informative posts from across our family of patient communities. To nominate a post, discussion, photo, or video, email the link to email@example.com.