ALD & AMN Research, Advocacy & Patient Support
 
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ALD & AMN
Research, Advocacy & Patient Support

We are 
a 501(c)3 non-profit organization focused on research, advocacy and patient support to low-income families affected by
adrenoleukodystrophy (ALD) and adrenomyeloneuropathy (AMN).

The Myelin Project was established in 1989 by Augusto and Michaela Odone for their son Lorenzo who suffered from
ALD - a rare genetic myelin disease that deteriorates myelin in the brain and central nervous system.

Although not medical doctors, the Odones developed a treatment,
Lorenzo's Oil now adopted throughout the world. The story of the Odones' struggle against ALD was dramatized in the 1992 Universal Studios release Lorenzo's Oil starring Nick Nolte and Susan Sarandon. For information on how to obtain the oil, click here.

~News~


January 20th, 2015
Our campaign to support the newly formed "Lorenzo Odone Patient Support Fund"
has raised over $30,000. Help us reach our goal of $35,000 and Donate today!

October 7th, 2014

The Myelin Project's 2014 International Scientific Conference at Edinburgh Hilton Airport Hotel was a gathering of top myelin and leukodystrophy researchers in the world. Click here for more information.

September 25th, 2014
California Governor Jerry Brown officially signed Assembly Bill 1559, sponsored by The Myelin Project and authored by Dr. Richard Pan, making CA the fourth state in the US to screen newborns for adrenoleukodystrophy (ALD). Click here for more information.

Lorenzo's Oil
is currently available to patients with adrenoleukodystrophy (ALD) aged 18 months to 18 years that meet the criteria: normal MRI, and positive VLCFAs. Click here for more information.
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(Click the image above for more
information on the Lorenzo
Odone Patient Support Fund.)