The contact information you're submitting is for myself and Gina Cousineau of http://bahbad.org. We are currently combining forces to compile all ALD families into one easily accessible form for tracking and contacting purposes. Adrenoleukodystrophy continues to take the lives of boys and turn families upside down. Whatever your experience is or was with ALD please take a moment fill out the form with your families information. No contact information will be shared unless we have asked for your consent. All ALD families need to unite as one, this is only the beginning of further information and a project that will be in the works. With your information we will be able to send you information and further as we develop it. Many of us have gone on a quest as individuals while dealing with this monster known as ALD, now it is time to join forces. Hopefully we will be able to push information into every home and legislation in every government expressing the need for early diagnosis of ALD in boys and also the need for young women to know if they are carriers of the gene.