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 :)
Views: 360
Replies to This Discussion
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Permalink Reply by Kelly S. on -
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
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Permalink Reply by Wendy on
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Im trying to find all the people on here...guess Im not clicking on the right thing??? Gawd it sucks being electronically sensitive!!
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Permalink Reply by Bill Groel on -
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.
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Permalink Reply by Michele Birrittieri on
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Thank you Kelly and Bill for replying!!! This is great!!!
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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.
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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!!
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Permalink Reply by Kelly S. on
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Go to the "members" link at the top of the page. If you find someone you know, cli
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Permalink Reply by Colleen on -
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
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Permalink Reply by Brenda Yaste on -
Name: Brenda Yaste
Relationships to patient: Mother
Patient name and age: Ryan - age 13
Known Family History: Yes. My father was diagnosed with AMN in 2004, which led us to have our son tested. My father has since passed in 2006.
Current status: Asymptomatic and enrolled in the LO study at KKI/JHH since 2004.
Additional Comment: My son will be exiting the study in 06/12. What happens next?
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