The Myelin Projecthas partnered with The ALD-AMN Global Alliance (AAGA)to unite like minded charitable foundations from around the world with the common goal to spread awareness, raise money to advance research for treatments and a cure, expand the bone marrow and cord blood registries and provide support, direction, and information to ALD and AMN affected persons and their families. Click herefor more information.
The Myelin Projecthas also partnered with The Leukodystrophy Alliance (LA) for similar purposes. The mission statement of the LA is "Leveraging Resources to Help Those Affected by the Leukodystrophies". Click here for more information.
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What is Myelin?
Myelinis the insulating sheath surrounding nerve cells. It 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. Myelincan be destroyed by hereditary neuro-degenerative illnesses such as ALD, and also acquired by diseases such as multiple sclerosis. There is no known cure for any demyelinating illness.
"Lorenzo and his Parents"
By: Augusto Odone
Augusto Odone's new book, "Lorenzo and his Parents" has now been released in English. Click on the image to the left to be directed to more information. You can also purchase the book via this link.
The Myelin Project's 22nd
International Scientific Conference
The Myelin Project met in Frankfurt, Germany at the Mercure Hotel on October 4th and 5th for The Myelin Project's 22nd Annual International Scientific Conference. Click here for more information on the event.
In ALD pre-symptomatic boys Lorenzo's Oil often (but not always) prevents the onset of the disease by stopping the body from producing the very long chain fatty acids, whose buildup leads to demyelination. It is specific to ALD, does not repair myelin, and does not have any known effect on other demyelinating disorders. Click here for more information on the oil and how to obtain it.