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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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About

Ben created this Ning Network.
 

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

Ben's Friends Member Survey

Started by Scott Orn in General Discussions. Last reply by dancermom Mar 22. 1 Reply

We are working with a non profit consulting firm called Bridgespan that helped us put this survey together to help us quantify the benefits of Ben's Friends. The hope is that we can use the data to make the communities better and to apply for grants…Continue

How to handle the news

Started by jaytone in General Discussions. Last reply by Tracey Stuart Mar 12. 5 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

Let's have a discussion about diet

Started by dancermom in General Discussions Mar 4. 0 Replies

Diet is important when you have ALD.  What have your doctors recommended to you about diet?  What do you feed your kids with ALD, or if you are an adult with ALD, what do you eat yourself?Continue

Is anyone participating in the Starbeam Study for gene therapy for CCALD?

Started by dancermom in General Discussions Mar 2. 0 Replies

http://www.starbeamstudy.com/study.phpDOES YOUR FAMILY MEMBER HAVE CCALD?HE MAY BE ELIGIBLE FOR THE STARBEAM STUDYThe Starbeam Study, a …Continue

Join the Global Genes Webinar on Health Insurance Issues

Find out how you can better evaluate what option is best suited for your individual needs. Learn about the different types of health insurance and emerging trends in benefit design and affordability for individuals with rare diseases.

Join the  FREE Navigating Insurance Issues Webinar on April 30, 2014 at 10am PST / 1pm EST / 6pm in UKRegister Now!

For more information about the Webinar, visit this link.

Read more about Global Genes,a 501(c)3 (non profit).

Mobile App and E-Book Available for Download!

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 Kelbel
"Giant welcome Kelbel! One tip, if you have specific questions it's best to start a New…"
yesterday

Moderator
dancermom left a comment for Kelbel
"Welcome, Kelbel, to this supportive community. I am sorry to hear that your son has ALD. Feel free…"
yesterday
Kelbel is now a member of Adrenoleukodystrophy (ALD) Online Support Group
yesterday
Scott Orn left a comment for Sandra Pena
"Great to have you here Sandra! One tip, if you have specific questions it's best to start a…"
Sunday

Top Content 

1 Never give up.

Never give up.

Added by Armando A. on April 20, 2014

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Blog Posts

Never give up.

Posted by Armando A. on April 20, 2014 at 2:41am 0 Comments

Just wanted to share this inspiring video.

Laugh often. Love a lot. Be strong. Never give up.…

Continue

March 2014 Community Newsletter

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

Dear ALD Support Family and Friends,

March 2014 is an exciting month for Ben’s Friends, as everything seems to fall into place! But before we share the good news, we invite you to participate in a brief survey on the positive impact…

Continue

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