The Myelin Projectwas established in 1989 by Augusto and Michaela Odone for their son Lorenzowho 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 releaseLorenzo's Oil starring Nick Nolte and Susan Sarandon. For information on how to obtain the oil, click here.
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 withadrenoleukodystrophy (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.)