Funding Myelin Research Since  1989

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Our Mission is to:

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

Welcome to our website 

We are a 501(c)(3) international medical research organization that has been funding myelin research across the globe and inducing international scientific collaboration for over two decades. Founded in 1989 by Augusto and Michaela Odone for their son, Lorenzo, who suffered from adrenoleukodystrophy (X-ALD), the Odones' story was dramatized in the film "Lorenzo's Oil" starring Nick Nolte and Susan Sarandon, released by Universal Studios in 1992. More information on the film, the oil, the Odones.

What is Myelin?

Myelin is the insulating sheath surrounding nerve cells.  It is the white matter coating our nerves, enabling them to conduct impulses between the brain and other parts of the body. It consists of a layer of proteins packed between two layers of lipids. Myelin can be destroyed by hereditary neuro-degenerative illnesses such as ALD, and also by acquired diseases such as multiple sclerosis.  There is no known cure for demyelinating illnesses.
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We are moving forward with getting ALD in the NBS Program in California, AND WE NEED YOUR HELP!  Please send a letter of support for Bill AB 1559THIS LINK  is a sample letter you can base yours off of, but please try to personalize it. We definitely need letters of support from the ALD groups, but letters from families that tell your personal story will also be 

very effective. Please address the letters to our author, Dr. Pan, as follows:

Honorable Richard Pan, MD
Chair of Assembly Health Committee
California State Capitol, Room 6005
Sacramento, CA 95814

Please include YOUR ADDRESS in your letter & send to haley@knudsenassociates.com who will get letters to Dr. Pan’s office. We also would like"family profiles" like this to help tell your story.

NEWS - The Myelin Project and state assemblyman Dr. Richard Pan hold press conference to introduce CA ALD Newborn Screening Bill AB1559 at UC Davis' Children's Hospital 
January 29th, 2014 - The Myelin Project held a press conference at UC Davis' Children's Hospital in Sacramento, CA introducing a historic Bill AB1559 for mandatory adrenoleukodystrophy (ALD) newborn screening in the state of California.  Dr. Richard Pan, state assemblyman and chair of Assembly Committee on Health, has agreed to sponsor the bill.  Dr. Pan is a pediatrician and understands the necessity of newborn screening to detect and treat ALD effectively. 

A special thank you to Dr. Pan, Mike Knudsen, Haley Stauss, Dr. Keith Van Haren, Robyn, Daryl, and Ethan Jeffcoat, Jeremy Hill Sr. & Jr., Janis Sherwood, Marguerite Crespillo, Susan, Julian, and Christian Henderson, and Jina Forney-Marsh.

In ALD pre-symptomatic boys Lorenzo's Oil often (but not always) prevents the onset of the disease by stopping the body from producing the very long chain fatty acids, whose buildup leads to demyelination. It is specific to ALD, does not repair myelin, and does not have any known effect on other demyelinating disorders. Click here for more information.