WELCOME

Welcome! You're not alone.

If your family has been affected by Adrenoleukodystrophy (ALD), consider Adrenoleukodystrophy (ALD) Support Network your second home.

NOW....GET STARTED:

1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group
6. Follow us on Twitter
7. Become a fan to our Facebook

Got some QUESTIONS? 
Check our FAQ PAGE.

Read More from our  First-Time-User Guide.

Concerned About Privacy

Since content and usernames are searchable on this site, you may protect your anonymity by creating a unique username.

To change username, click here. 

Birthdays

There are no birthdays today

Need a Doctor or Specialist?

Disclaimer

All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.

Please Be Kind & Use Appropriate Language

Let's Keep it Nice & Clean
1. No Spam
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
4. No Profanity, sexual references and illegal activity subject matter in the Chat Room.   
5. No specific doctor or hospital name mentioned in a negative context, for legal reasons.    
Specific doctor or hospital names in a positive context are welcome.
6. No sharing of members' posts to other sites without their express permission.
7. There are many sites for discussing religion and politics. This is not one of them. Divisive posts about religion and politics will be deleted.
Thanks for your cooperation.
 

Community Moderators

ClinicalTrials.gov Studies

Loading… Loading feed

Videos

  • Add Videos
  • View All

Gift Store

 

Ben's Friends Fundraiser

Hi Past & Present Ben's Friends Supporters! 
We really need your help. Our annual Ben's Friends fundraiser is way below goal. So far we are at $14k with many generous donations. But at the very least we need to be at $25k, and ideally at $35k or above. 
We're probably the most efficient non profit in the world, helping 125,000 patients per month with a budget of $3k per month. But even we can't survive on $14k. 

Please donate at our super easy Donation Page at Ben's Friends . A $5 donation will make a big donation. Everything is tax deductible!

We realize most members aren't in a position to donate. Those members can help by spreading the word about the fundraiser on the communities and on Facebook. 

We need your help to keep Ben's Friends alive and going strong!
We really need your help! Please donate, even if it's $5, that will really help.

Thanks!
Scott
(Co-Founder of Ben's Friend)

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

Help Patients Just Like You By Joining Our Team Fundraising Campaign

Started by Ben in General Discussions Dec 28, 2014. 0 Replies

ANNOUNCING OUR ANNUAL BENS FRIENDS FUNDRAISER!!All of our patient communities are banding together to raise funds by creating their own fundraising pages and engaging their friends, family, and community to support Ben's Friends. The money will help…Continue

Happy Holidays from your Ben's Friends Moderator team

Started by dancermom in General Discussions Dec 24, 2014. 0 Replies

Wishing you a lovely holiday season!Sincerely, Tracey and DancermomContinue

Carriers

Started by Penny Greenwell in General Discussions. Last reply by jaytone Dec 20, 2014. 1 Reply

Hi All, My name is Penny, we have an adult son that was diagnosed withALD after a traumatic brain injury.  Actually the brain injury became a blessing, through the many doctors and rehabs he went to, it was recommended that we look into ALD.  He had…Continue

CA Governor Jerry Brown Signed Bill to Screen Newborns for ALD September 2014

Started by dancermom in General Discussions Nov 25, 2014. 0 Replies

Governor Jerry Brown Signs Bill to Screen Newborns for ALD(September press release from the Myelin Project: http://www.pr.com/press-release/584040)Governor Jerry Brown signed Assembly Bill 1559…Continue

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 Tracy W
"Huge welcome Tracy! One tip, if you have specific questions it's best to start a New…"
6 hours ago
Tracy W is now a member of Adrenoleukodystrophy (ALD) Online Support Group
6 hours ago
Jusecs Louis updated their profile
Thursday

Moderator
dancermom updated their profile
Wednesday
 
 
 

Help Us Help Others

Help Ben's Friends

Like & Follow Us!

Follow Me on Pinterest

Give Us A Review

Bens Friends

Join the Ben's Friends list

Are You in Crisis?

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

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

To Support ALDSupport.org, Click an Ad. Or Two.

"To Know the Joy of Giving"

Photos

Loading…
  • Add Photos
  • View All

Blog Posts

Ben's Friends Monthly Newsletter - November 2014 Issue

Posted by Ben on November 26, 2014 at 9:59am 0 Comments

Just the Stats:

Communities: 38

Friends: 44,000+

GratitudeThank…
Continue

Events

Partners

BensFriends.org is proud to partner with a number of organizations to help our members in various areas, including legal, financial, research and medical. 

Know more about our PARTNERSvisit this link.

© 2015   Created by Bensfriends.org

Badges  |  Report an Issue  |  Terms of Service