Adrenoleukodystrophy (ALD) Support


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Ben Munoz
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Ben Munoz posted a blog post

May 2012 ALDSupport Community Newsletter

Dear Friends and Family of ALDSupport,We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient communities have reached four consecutive monthly peaks in all aspects of our activities, overshooting even the targets we have set ourselves two months ahead! Here are some highlights:Total members for all communities at the end of April: 17,629. This is 924 higher than March, our biggest…See More
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Ben Munoz left a comment for lauren54
"Hi, Lauren, welcome to the community here.  There are lots of great people here - all here for your support.  Please don't be shy about saying hello to anyone or ask anyone a question.  Love the video you…"
May 9

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Ben Munoz's Blog

May 2012 ALDSupport Community Newsletter

Dear Friends and Family of ALDSupport,

We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient communities have reached four consecutive monthly peaks in all aspects of our activities, overshooting even the targets we have set ourselves two months ahead!

 

Here are some highlights:

Total members for all communities at the…

Continue

Posted on May 25, 2012 at 8:40am

April 2012 Community Newsletter

Dear Friends and Family of ALDSupport,

April – the smell of spring in the air!

Spring brings a lot of positive notes: it signals growth and rebirth. As Ben’s Friends, our patient support group is growing real fast. As a member community, you’ll see stats on how we contributed to this growth as reported below. Be assured that no matter how small the contribution may be, it adds up and it is very much appreciated!

Our presence is being felt globally…

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Posted on April 20, 2012 at 8:30pm

March 2012 Community Newsletter

Dear Friends and Family of ALDSupport,

February brought us great strides as our various communities of rare disease support groups gathered the largest number of new memberships of all time! The volume of blog posts, comments and discussions also increased. We at Ben’s Friends commend you all for your active support of our communities!

 

IN THIS …

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Posted on March 22, 2012 at 11:49pm

February 2012 Community Newsletter

Dear Friends and Family of ALDSupport,

As you well know, living with ALD can be very challenging not only for you but to your families as well. This organization was built with a view to helping you and your families to live up to this challenge by linking you up with people who share similar experiences and have succeeded in maintaining a positive outlook!

Explore more how our community had helped members face the challenge…

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Posted on February 23, 2012 at 10:00am

January 2012 Community Newsletter

ALDSupport Members, Friends and Family,

As we begin a brand new year, envigorated with greater joy and compassion, we renewed our greater commitments to our community. BensFriends grew tremendously in the past three years, and we want to take this moment both to thank you and to make a promise to continue fulfill our mission: to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like…

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Posted on January 25, 2012 at 10:00am

Comment Wall (34 comments)

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Join Adrenoleukodystrophy (ALD) Support

At 1:00pm on November 17, 2011, valerie said…

pls tell us some good stories, and that there willbe a cure soon, my heart is breaking

At 9:57am on August 16, 2011, mark byrne said…
Hi ben sorry not an site for a bit on my way to see doctors now in hospital in Dublin Iabout how Ald can effect Nathan i now a lot now but need to now a lot mare pray for a cure soon 
At 3:27pm on August 7, 2011, mark byrne said…
Hi ben sorry have not been on line for a bit that's good news more support is good 
At 8:35pm on July 5, 2011, Wayne W. Boodoo said…

Thank you Ben... I really appreciate this, but the honour is all mine...

 

Already Subscribed to the Mailing List, and I'd be sure to spread the word as far as I can...

At 6:40pm on July 21, 2010, Marcel White said…
I typed 'ALD support'. Thank you for the welcome.

My wife is a carrier of the ALD gene. Her father is very ill with advanced AMN. My son, Ambrose, was diagnosed last month with the ALD gene also (he is 11 months old). I had never heard of the illness until 2-3 months ago.

I am trying to learn about it.
At 12:35pm on June 18, 2010, Kelly S. said…
Hey Ben, thanks -- I'm glad this was posted on FB to find!
At 2:03pm on May 6, 2010, Stephanie said…
Hi Ben! I will get the results of the ALD test Monday. It's killing me waiting for the results. The endocrinologist said that most cases of Addisons Disease are caused by autoimmune disorders, and more rarely ALD, but it seems as though most ALD cases present with Addisons. Ughh, any thoughts?
At 8:29pm on May 3, 2010,
Moderator
Tracey Stuart
said…
Hi Ben. I just wanted to let you know I posted ALD support, Bens Friends, and my caring bridge site on my facebook. I tried all the links and they all work. Check it out and let me know what you think.

Tracey
At 3:44pm on March 26, 2010, Margaret Caldwell said…
Hi there! I just joined and have found my sister on here (Jamie Barlow), and am wondering how she could be one of my friends. Also, when I try to change the appearance of my page, I click on the new scheme, but it always reverts back to the default scheme. Any help please?
At 9:10pm on March 11, 2010, Phil Golden said…
Hi Ben... Thanks for the kind words. There are a few ways I can think of. It would probably be better to discuss over email?? Thanks again. It is a good thing you have done here from both awareness project management and ALD Dad points of view. Thank you!
 
 
 

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