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 medical research and rare disease education and advocacy.

About Us

Founded in 1989 by Augusto and Michaela Odone for their son, Lorenzo, who suffered from adrenoleukodystrophy (ALD), we were established to advance medical research so that future children with ALD would not have to experience what the Odone family had to endure. 

The Odones' story was dramatized in the 1992 Universal Studios film "Lorenzo's Oil" starring Nick Nolte and Susan Sarandon. Click the following links for more information on: the filmthe oilthe Odones.

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Our Mission:

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

Sacramento - June 18th, 2014
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.

Thank you to Assemblyman 
Dr. Richard Pan, our bill author, Senator Hernandez, De Leon, Hill, Fuller, Lieu, our co-authors, and all those that voiced their committed support. Next steps: Senate Appropriations, a Senate floor vote, and then it's off to Governor Brown! Click here for more information.

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.