Adrenoleukodystrophy (ALD) Support
Support group connecting families affected by Adrenoleukodystrophy (ALD).
Forum Discussions (21)
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140+ members, let's get to know each otherHi 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 in General DiscussionsLatest Reply |
 Lorenzo's Oil Study Support on FacebookFYI: 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 in General DiscussionsLatest Reply |
'Amble for ALD' fundraiser. Please join in and raise funds for ALD researchHi 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 bostock in General DiscussionsLatest Reply |
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Article regarding loss of funding for KKIHere 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 in General Discussions |
0 | yesterday |
How to Create Group and Organize A Meetup in Your CitySince 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 in General Discussions |
0 | Dec 16, 2011 |
140+ members, let's get to know each otherHi 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 in General Discussions |
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Dec 9, 2011 Reply by Mitali |
pregnancyI am a carrier of the ALD gene and im wondering if anyone has had embryos tested or have done IVF? Started by Niamh in General Discussions |
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Nov 28, 2011 Reply by Mitzyjane |
 Carrier symptoms - document for us to useI 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 in General Discussions |
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Nov 13, 2011 Reply by carlynroy |
 Lorenzo's Oil Study at JHHI 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 in General Discussions |
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Nov 10, 2011 Reply by Brenda Yaste |
How to ComfortHello All, My wife has 2 little brother's diagnosed with ALD. She was tested and I am happy to say she does not carry the gene. The main r… Started by SoDak in General Discussions |
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Nov 6, 2011 Reply by Colleen |
 Reducing intake of long chain fatty acidsIs anyone aware of where I can get information with regard to diet and reducing the intake of products containing long chain fatty acids? … Started by Paul Hurst in General Discussions |
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Oct 11, 2011 Reply by Paul Hurst |
Lorenzo's Oil Study Support on FacebookFYI: 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 in General Discussions |
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Sep 26, 2011 Reply by Ben Munoz |
 CarriersMy 2 girls 18 and 14 and I are all carriers for ALD. I was wondering if there are any other moms and / or daughters out there. I am waiting… Started by Tracey Stuart in General Discussions |
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Sep 23, 2011 Reply by mark byrne |
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