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.
Your donation will...
- Fund Medical Research for Myelin Repair
- Raise awareness of demyelinating diseases
- Induce international scientific collaboration
- Advocate for newborn screening
- Find a cure for demyelinating illnesses
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 byacquired diseases such as multiple sclerosis. There is no known cure for demyelinating illnesses.
eScripis proven to be a fantastic resource for fundraising where participating business partners contribute a percentage of your grocery loyalty cards, credit card, and debit/ATM card purchases to the school, group or organization of your choice. We offer the best vehicle for simple, year-round fundraising. eScrip streamlines the whole fundraising process and puts everyone in the winner's circle.Click hereor the image above to get started.
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.
"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.