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 :)

I'll bite :)

Name: Kelly Smith

Relationship to patient(s): Wife

Patient's name(s) and age: Anthony, 41 y/o

Known family history: Yes

Date of diagnosis: 1996

Current status: BMT completed at Duke in February 2011, LOES Score on MRI=2 (unchanged since pre-transplant), physical symptoms are still advancing, barely able to walk anymore

Name: Bill Groel

Relationships to patients: Father

Patients names and age: Connor - 12 and Clancy - 5

Known Family History: Yes. my wife's brother died in the early 80's at age 8. Her family has worked with Dr. Moser and Dr. Raymond since then so we knew my wife was a carrier. Two of our three boys have ALD.

Date of diagnosis: both of my boys were diagnosed using cord blood so we knew weeks after they were born.

Current status: Both asymptomatic and enrolled in the LO study at JHH. Connor has been enrolled for 8 years and Clancy has been enrolled for 4 years.

Additional Comment: One of my big concerns is that my oldest son Connor will only be in the study for another 18 months. Once he's out of the study there isn't much assistance in terms of preventative therapy.

Thank you Kelly and Bill for replying!!! This is great!!!

I love this post.

Hey you!! I found you!!

I love you honey....so glad to see your pic!!

Hi Micelle....now that I have given up on Fbook, I intend to make this my hang out place!!

I love all of you and unfortunately we have loads in common. Life is what it is and we are all here for each other. I appreciate this site and look forward to talking to all of you.

You know you can’t get rid of me! :))

This is off the grid a little, but how do I find people that I know are on here and/or invite them to be friends?

Thank you!! Hugs!!

Im trying to find all the people on here…guess Im not clicking on the right thing??? Gawd it sucks being electronically sensitive!!

Go to the “members” link at the top of the page. If you find someone you know, cli

Name: Colleen Walker

Relationship to patient(s): Mother

Patient's name(s) and age: Logan 12 ; Kyle 15

Known family history: Yes (although very annoyingly came to light only AFTER Logan had adrenal crisis)

Date of diagnosis: January 2011

Current status: Logan is post-BMT (May 2011) ; Kyle is asymptomatic

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?

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.

Name: Sheila Mentzer

Relationship to patient(s): grandmother

Patient's name(s) and age: Dylan 7yrs

Known family history: No

Date of diagnosis:December 2011

Current status: Recovering from failed BMT. Impaired visually, non-verbal, with other complications. It is unclear at this time if the ALD enhancement has become active again. Waiting for the 6 month MRI in August. I will be Dylan's caretaker as his parents must return to work with the start of the school year. He is struggling in many ways but I love to be with him. He enjoys being in the pool. It seems to be the one place his symptoms are softened and he feels relaxed and independent. We got him a big wheel for his birthday and he loves that. Because it is low to the ground he can still ride it himself, with supervision, despite his blindness. He likes the independence. I would like to help others and would appreciate any information that will enable us to help Dylan regain as much of himself as possible. As far as I can tell there is very little for support or help for ALD families.

Hi. I just joined this group. I noticed there are 400+ views of this page but few replies. I think many times people don't know what to say in the face of this disease. I wanted you to know that I am thinking of you and your sons, as my family too, faces this struggle. I don't know that we can help, but please ask and share if you want.