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. Click here for more info.
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