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We are 
a 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 Lorenzo's Oil starring Nick Nolte and Susan Sarandon. For information on how to obtain the oil, click here.

Lorenzo & His Parents
By: Augusto Odone
In 1984, six-year-old Lorenzo Odone was diagnosed with adrenoleukodystrophy - an incurable genetic disease. His parents refused to give up hope and with great determination set out to find a cure.

Augusto tells the moving story first hand in this inspirational autobiography.
Click here for a preview of "Lorenzo & His Parents" and get your copy today!
~ Partners ~

We are proud partners of the Leukodystrophy Alliance, an international group of like-minded non profits.
Learn more...
We are proud partners of the ALD/AMN Global Alliance, an international group of like-minded non profits. Learn more...
We are a proud partner of ALD Connect to advance research and care. Learn more
~ Events ~
August 27th, 2015
We are excited to announce that the federal advisory committee for diseases in newborns voted to recommend the addition of Adrenoleukodystrophy‬ to the national Newborn Screeninglist. This means that we are one step closer to ALD newborn screening nationwide! Thank you for helping ‪#‎SaveTheBoys.
October 10th, 2015
Pennsylvania advocates to host the Run For Research 5K Run/Walk & Family Fun Day to benefit The Myelin Project Research Fund. Learn more...
February 6th, 2016
We're happy to announce we'll be hosting the
Ragin' Cajun Fundraiser for AMN at Corpus Christi Parish Hall in Pacific Palisades, California. The event will feature a live band, three course meal, raffle, and live auction prizes. Learn more...

If you are an ALD or AMN patient, you can join the ALD Connect Patient Portal. Learn more...
As a Gold-level GuideStar Exchange participant
we are committed to transparency.
~ News ~
August 20th, 2015
We are honored to welcome Kathy Slote to our Board of Directors. She recently retired as Senior Credit Officer and Executive Vice President of the Commercial Real Estate Group of Wells Fargo Bank.
August 4th, 2015
Dr. Ian Duncan, Chair of our Scientific Advisory Committee, awarded Lifetime Excellence in Research Award from the American Veterinary Medical Association for several years of work in myelin disease research. Learn more...
May 15th, 2015
The Children's Hospital of Philadelphia & The Leukodystrophy Care Network launch Leukodystrophy Center of Excellence. Learn more...

April 17th, 2015

The 2015 Trap Shoot Fundraiser in Lincoln, CA to benefit The Myelin Project Research Fund raises over $30,000! Learn more...

January 1st, 2015
The Myelin Project's Lorenzo Odone Patient Support Fund is established; campaign raises over $30,000 to support low income ALD/AMN patients and their families. Learn more...

October 7th, 2014

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

September 25th, 2014
California Governor Jerry Brown officially signed Assembly Bill 1559, sponsored by The Myelin Project, to add  adrenoleukodystrophy (ALD) to its newborn screening program. Learn more...

Lorenzo's Oil
designed to normalize the accumulation
of the very long chain fatty acids in the brain thereby slowing the progression of adrenoleukodystrophy (ALD)