140+ members, let's get to know each other

Hi all,

My name is Michele and my two sons were diagnosed with ALD in April of 2010. I found this support group back then; however, a couple of groups on Facebook quickly became my go to for sharing information, asking questions and supporting others affected by ALD.

With Facebook not being a moderated forum; sometimes the posts are not directly related to support.

So, how many of us on here can create a supportive atmosphere for those of us affected by ALD/AMN? It looks as though Ben and Scott formed this site in 2009, but it appears to have very little activity. Let's change that!!!! Start some discussion threads! Questions, comments, concerns. I'll start!

Copy and paste the following into your reply, just change the answers to suit you....let's get to know each other:

Name: Michele Birrittieri

Relationship to patient(s): Mother

Patient's name(s) and age: Anthony, 6yo & Joey, 2 yo

Known family history: No

Date of diagnosis: April 2010

Current status: Both asymptomatic, enrolled in Lorenzo's Oil clinical trial at Johns Hopkins

Your turn :)

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Replies to This Discussion

Permalink Reply by Mitali on December 8, 2011 at 10:01pm

Name: Mitali

Relationships to patient: Mother

Patient name and age: Arav - age 4

Known Family History: Not yet. My brother was diagnosed with Addisson's disease. But recently we did his MRI which indicated changes in the white matter in his brain. Still have the confirm the abnormality in his ABCD gene to confirm if he has ALD.

Current status: Has medications going on for Addissons. Asymtomatic, but Dr has suggested that we start him on Lorenzo's oil.

Additional Comment: How does the oil help? What after they exit the study? Also what about my brother who never has had any treatment. Are there any other treatment options to get rid of the disease or atleast prevent / delay it?

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Permalink Reply by PeteG on March 7, 2012 at 7:25am

Hello Michele,

Name: Pete Grigsby

Relationship to patient(s): Father

Patient's name(s) and age: Gabriel, 9yo

Known family history: Somewhat. Both my boys (Gabriel & Nathan) are adopted from within my wife's family. They have the same mother (unfortunately) but different fathers. My youngest has been diagnosed in a more advanced stage. My other son, Nathan (age 11) has shown no signs, but we are waiting for his test to come back from the Krieger Institute.

Date of diagnosis: January 2012

Current status: Gabriel's LOES score is 14 so he is not eligable for either Lorenzo's oil, or the transplant. He is still able to run and play, but he tires out much faster. His motor skills are going as he is unable to write, or read very well. Still enjoys being read to. Still has a wonderful, sweet disposition

My wife and I are so happy to have found this site. We are both willing to help with anything/everything that helps further the knowledge of this terrible disease, and helps to find a cure for ALL patients.