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

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


We are 
a 501(c)3 non-profit organization.
All donations are fully tax-deductible.
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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.
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April 17th, 2015
The 2015 Trap Shoot Fundraiser in Lincoln, CA to benefit The Myelin Project Research Fund will be hosted by Myelin Project Board Member and ALD mother Diane Love.
Learn more
or
Register Now

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 top myelin and leukodystrophy researchers in the world.
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 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