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The Myelin Projectwas 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 releaseLorenzo's Oil starring Nick Nolte and Susan Sarandon. For information on how to obtain the oil, click here.
Lorenzo's Oil is currently available to patients withALD aged 18 months to 18 years that meet the criteria. Click here for more info.
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 add adrenoleukodystrophy (ALD) to its newborn screening program. Learn more
Click the image for more information on the Lorenzo Odone Patient Support Fund.
We have partnered with ALD Connect; empowering patients, raising awareness, and accelerating the translation of scientific advances into better clinical care.Learn more