General Discussions (24)

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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 co… Started by Michele BirrittieriLatest Reply
Lorenzo's Oil Study Support on Facebook FYI: For those of you who have sons currently enrolled in the Lorenzo's Oil Study at Kennedy Krieger, there is a Facebook group you can jo… Started by princessdiLatest Reply
'Amble for ALD' fundraiser. Please join in and raise funds for ALD research Hi everyone I recently posted an event for the 10th of September this year to raise money for research in to ALD. I represent the uk based… Started by mark bostockLatest Reply

Featured Discussions

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 co…

Started by Michele BirrittieriLatest Reply

Lorenzo's Oil Study Support on Facebook

FYI: For those of you who have sons currently enrolled in the Lorenzo's Oil Study at Kennedy Krieger, there is a Facebook group you can jo…

Started by princessdiLatest Reply

'Amble for ALD' fundraiser. Please join in and raise funds for ALD research

Hi everyone I recently posted an event for the 10th of September this year to raise money for research in to ALD. I represent the uk based…

Started by mark bostockLatest Reply

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Discussions	Replies	Latest Activity
What would you do to comfort a sick friend? "What would you do to comfort a sick friend?" Aside from the usual bouquet of flowers and basket of fruits, I'd like to hear your suggestio… Started by Armando A.	0	May 9
Treatment for AMN/ALD men and women Hi, I want to share my experience with everyone, I have found something I think should be used as a treatment for everyone suffering with A… Started by Steven	1	May 5 Reply by julie_
Lorenzo's Oil Study Support on Facebook FYI: For those of you who have sons currently enrolled in the Lorenzo's Oil Study at Kennedy Krieger, there is a Facebook group you can jo… Started by princessdi	2	Mar 24 Reply by valerie
Small behavior change question. Hi, I have a question that I'm hoping someone can give me some insight on. My son Gabriel is in a bit more advanced stage (LOES score of 1… Started by PeteG	0	Mar 7
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 co… Started by Michele Birrittieri	14	Mar 7 Reply by PeteG
Article regarding loss of funding for KKI Here is an article the Kansas City Star did on our family. Just out today. http://www.kansascity.com/2012/02/10/3425496/lorenzos-oil-a-ka… Started by princessdi	0	Feb 13
Moderator How to Create Group and Organize A Meetup in Your City Since others have subsequently asked about organizing groups and meetups in their area, the moderators and I have decided to create this fo… Started by Ben Munoz	0	Dec 16, 2011
pregnancy I am a carrier of the ALD gene and im wondering if anyone has had embryos tested or have done IVF? Started by Niamh	1	Nov 27, 2011 Reply by Mitzyjane
Carrier symptoms - document for us to use I want to compile a document comparing carrier symptoms, that we can have handy when visiting doctors. It can also sometimes be a relief to… Started by Colleen	2	Nov 13, 2011 Reply by carlynroy
Lorenzo's Oil Study at JHH I have two boys in the Lorenzo's oil study. Thankfully, they are both asymptomatic and are doing well. My oldest is now 11 and has just 2 y… Started by Bill Groel	9	Nov 10, 2011 Reply by Brenda Yaste