My son, Joey Johnson, has neonatal adrenoleukodystrophy. Adrenoleukodystrophy (ALD) damages the white matter of the brain and impairs the adrenal glands. It stole all of his sight and most of his hearing by the time he was eighteen months old. Joey is 18 years old now.
I have found these resources helpful in my journey through the world of Leukodystrophy and Rare Diseases. To reach the resource, click on the title. If you have a resource that should be on the list then please let me know.
- Leukodystrophy definition
- The above link provides definitions for the different types of Leukodystrophy.
- General Information Neurological Disorders
- National Institute of Neurological Disorders and Stroke (NIDS)
- Martinez Foundation
- Manuela Martinez Foundation for Children with Metabolic Diseases has been created for the research, diagnosis and treatment of children with peroxisomal disorders and other lipid diseases.
- Deaf-Blind Information (peroxisomal biogenesis disorders)
- One of the major effects of infantile Refsum Disease (as well as the other peroxisomal biogenesis disorders) is the combination of significant auditory and visual impairments. These sensory losses...
- Great Medical Links
- ...individuals and institutions engaged in ongoing research into peroxisomal disorders. ... for hospitals, doctors, and people in the field of rare diseases and disorders. This is the oldest and most usefull website for the layman and professional alike. When you get there drop a note to the webmaster and ask him to add you to his mail list.
- Leukodystrophy Family NEW!
- This site is just starting up but shows great promise as a new Leukodystrophy community. Good chat area and discussion areas.
- United Leukodystrophy Foundation
- A nonprofit, voluntary health organization dedicated to providing patients and their families with information about their disease and assistance in identifying sources of medical care, social services, and genetic counseling...
- Myelin Project
- "Myelin" is the white matter coating our nerves, enabling them to conduct impulses between the brain and other parts of the body. It consists of a layer of proteins packed between two layers of lipids. "The Myelin Project" is an international grassroots organization whose mission is to accelerate medical research on myelin repair.
- Helen Keller National Center For Deaf-Blind Youths and Adults
- ...offers intensive and comprehensive rehabilitation training to individuals who are deaf-blind.
- Genetic Alliance
- Genetic Alliance increases the capacity of genetic advocacy groups to achieve their missions and leverages the voices of millions of individuals and families living with genetic conditions.
- New England Journal Of Medicine
- An excellent resource into the latest medical information.
- Abstracts-Molecular genetics of Adrenomyeloneuropathy
- Adrenoleukodystrophy (ALD) is an X-linked peroxisomal disease affecting 1/20000 males either as cerebral ALD in childhood or as adreno-myeloneuropathy (AMN) in adulthood...
- National Organization of Rare Diseases
- More resources on Adrenoleukodystrophy (Addison-Schilder syndrome,
Fanconi-Prader syndrome, Siemerling-Creutzfeldt syndrome, bronze Schilder
disease) - from the Birth Disorder Information Directory.
(no longer being updated).
- Possible role of organic solvent in Leukodystrophy
- like perchlorethylene or trichloroethylene exposure in demyelination. Let me know what you think after reading this. Is there a chemical leukodystrophy?
- chemical leukodystrophy - New page I have started
- Current Search Results For Leukodystrophy
- Other search engine results for Leukodystrophy:
- Leukodystrophy in the News
- The latest in breaking ALD news from Google