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We are 501(c)3 non-profit organization.
All donations are fully tax-deductible. 

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 starring Nick Nolte and Susan Sarandon. For information on how to obtain the oil, .

~ What is ALD? ~
"Lorenzo &
His Parents"

By: Augusto Odone
In 1984, six-year-old Lorenzo was diagnosed with an incurable genetic disease. His parents refused to give up hope and with great determination set out to find a cure. Click here for a preview of "Lorenzo & His Parents" and get your copy today!
Interested in joining our team? We are now accepting applications to join our Board of Directors! If you are a motivated individual with experience in the business, non-profit, or legal sector - apply today.
~ Partners ~
We are a proud partner of ALD Connect to advance research and care. Learn more
We are proud partners of the World Leukodystrophy Alliance, an international group of like-minded non profits. Learn more...
~ News ~
Thank You Secretary Burwell!

Secretary of Health and Human Services Sylvia Burwell has approved the addition of adrenoleukodystrophy (ALD) to the Recommended Uniform Screening Panel (RUSP). Read her statement here. California and New Jersey can now begin screening newborns for ALD. Thank you for helping us #SaveTheBoys.
Janis Sherwood Joins
our Board of Directors

It is with great pleasure that we welcome Janis Sherwood to our Board of Directors. Janis lost her son Sawyer to ALD back in 2003 and since then has been traveling thousands of miles throughout the country in a retrofitted 1981-model RV raising awareness‬ of ‪ALD‬ to help other parents avoid the same fate. Learn more...

$50,000 for Dr. Raymond's Lab

In partnership with Brian's Hope Foundation, The Myelin Project granted $50,000 to Dr. Gerald Raymond's lab at the University of Minnesota. Dr. Raymond’s lab is developing new tools to diagnose, manage, and treat all aspects of ALD and improve the lives of those affected.