A L D Research | Advocacy | Famliy Support We are a 501(c)3 non-profit organization. All donations are fully tax-deductible.
The Myelin Projectwas established in 1989 by Augusto and Michaela Odonefor 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.
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!
~ Partners ~
We are proud partners of the World Leukodystrophy 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
November is ALD Awareness Month. Help spread awareness and change your profile picture today using the above image.
Another Victory for ALD Newborn Screening
On August 27th 2015, the federal advisory committee for diseases in newborns voted to recommend the addition of Adrenoleukodystrophy to the national Newborn Screening list. This means that we are one step closer to ALD newborn screening nationwide! Thank you for helping #SaveTheBoys.