A L D  &   A M N
Research |
Advocacy | Patient Support

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We are a 501(c)3 non-profit organization
Research, Advocacy & Patient Support
for
adrenoleukodystrophy (ALD) &

 
adrenomyeloneuropathy
(AMN)

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's Oil
Lorenzo's Oil is currently available to patients with ALD aged 18 months to 18 years that meet the criteria. Click here for more info.
~ News ~
January 20th, 2015
The Lorenzo Odone Patient Support Fund Campaign raises over $30,000 for low income ALD/AMN patients and their families.

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 to learn more.

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 to learn more.

Rare Disease Day
Rare Disease Day is an international day of advocacy to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year. Learn more

Click the image for more information on
the Lorenzo Odone Patient Support Fund.

We have partnered with ALD Connect with combined goal of empowering patients, raising awareness, and accelerating the translation of scientific advances into better clinical care. Learn more