What are some organizations that can help?

There are many sites about ALD (Adrenoleukodystrophy)
http://www.kennedykrieger.org/patient-care/diagnoses-disorders/adrenoleukodystrophy-ald
http://www.aldsupport.org/
http://www.aldsupport.org/page/how-to-help
http://www.aldlife.org/

Aldlige.org has a "useful links" tab that brings up many more sites
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