Funding Medical Research Since  1989
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Welcome to our website 


We are a certified 501(c)(3) international non-profit organization focusing on funding medical research and advocating for newborn screening of rare genetic disease.

Our Mission:

- Fund Medical Research for Myelin Repair
- Raise awareness of ALD & AMN
- Advocate for newborn screening of ALD
- Find a cure for demyelinating illnesses

About Us


Augusto and Michaela Odone founded The Myelin Project in 1989 to find a cure for their son Lorenzo's rare terminal disease called ALD. The Odones' story was dramatized in the 1992 Universal Studios film "Lorenzo's Oil" starring Nick Nolte and Susan Sarandon.

News: 

Sacramento - June 18th, 2014 - AB 1559
The CA Senate Health Committee unanimously passed bill AB 1559. During our testimony the room fell absolutely silent - once finished, we received an emotional standing ovation thanks to emotive testimony of ALD patient Jeremy Hill Jr.  Click here to watch a video of our testimony. Next steps: Senate Appropriations, a Senate floor vote, and then it's off to Governor Brown! Click here for more information.

President, Patti Chapman with ALD advocates in Sacramento  supporting Assembly Bill 1559
(From left: Gina Cousineau of Be a Hero Become a Donor Foundation, Jeremy Hill, Jeremy Hill Jr., Patti Chapman of 
The Myelin Project, and Janis Sherwood of Fight ALD).

Newborn screening for ALD in CA  
Click here for more information.