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Wondering if there are any other ALD affected children who live near Rochester,NY? I would love to get a group going to meet others. I know my son feels very different since he doesn't know of anyone else with this disease. Thanks!
Please contact Janet Read at ULF and she'll send you a list of people in this area. I used to have one but it's too old now .... it's a great idea!
I live north of Buffalo, NY. My son is 12 years old and was Dx with ALD when he was 8 years old. The Dx was because another member of the family has Dx. He has a clear MRI and his has adrenal insufficiency. We have worked with Hunter's Hope based in Orchard Park, they have some information that may help but they are more helpful with Krabbe's disease. My son is pretty quiet about the disease. If you wish to talk more we can do it by email. Let me know.
Jane
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