Lorenzo’s Oil

The Real Lorenzo The Odone Family Lorenzo was diagnosed in 1984 Oumari and Lorenzo in the Comoros, 1983 Only remyelination would help Lorenzo.

Lorenzo’s Oil Lorenzo's Oil is a combination of a 4:1 mix of erucic acid and oleic acid, extracted from rapeseed oil and olive oil. Lorenzo’s Oil only prevents the onset of the disease's symptoms when diagnosed early

Lorenzo in 2008 Lorenzo turned 30 on May 29, 2008. He died one day later. Complications of aspiration pneumonia He was blind but he could hear. He communicated with sounds he could make.

Lorenzo’s Life Lorenzo enjoyed the pool and listening to novels being read. Oumouri and Lorenzo’s big brother Francesco were helping to care for him.

Oumouri, Augusto, and Lorenzo

The last photograph of Lorenzo Odone, taken a week ago; with him is his father, Augusto, who cared for him for so long Photo: DEREK BLAIR

Lorenzo’s Parents Started The Myelin Project in 1989 Although divorced still worked together for the Project. Augusto retired from The Myelin Project in 2007. Earned an honorary doctorate from the University of Stirling Moved back to Italy in summer 2010 Michaela, from Yonkers, NY, was very active with the Project until her death in 2000 from lung cancer. Here she is with Susan Sarandon at a fund-raiser.

Is an international scientific body which seeks to promote research into those diseases which destroy myelin Myelin - the white matter of the central nervous system without which the brain cannot transmit messages to other parts of the body. Goal: to bring hope to those suffering from conditions such as multiple sclerosis and the leukodystrophies (of which ALD is one)

http://www.myelin.org/ Let’s look at the website to see how myelin helps to conduct impulses between the brain and other parts of the body Lorenzo’s Oil In the U.S., Lorenzo's Oil can only be obtained through prescription by Kennedy Krieger authorized physicians. A 500ml bottle costs approximately $56.00. Some insurance companies will provide coverage for the oil, but others do not because it is still considered an experimental drug by the FDA.

Lipids – A review of the problem… VLCSFA refers to saturated chains that are 24 or 26 carbons long. “short” chains are 14, 16 or 18 carbons long. VLCSFAs are straight, not bent, and they may easily interact with and dissolve myelin.

Tricking the Enzyme ONE enzyme makes the harmless UFAs and the harmful VLCSFAs. VLCUFA: Oleic acid is unsaturated; the enzyme would use that “competitor” if it was present. Erucic Acid (22C) was an even better competitor. The earlier the treatment, the more effective it is.

Erucic Acid The main component of rapeseed oil

ALD – Oil increases harmless VLCUFA production

Peroxisomes (metabolize fatty acids in all cells) ALD is a peroxisome disorder Peroxisomes are involved with the breakdown of long chain fatty acids Major breakthrough: January 2010 Specific proteins are made in the peroxisomes to help the peroxisomes transfer into new cells when the cells divide. This discovery can help with screening carriers, diagnosis and treatment. University of Alberta, Canada, Dr. R Rachubinski

An animation http://www.myelin.org/resources/toolsforteachers .html

Related disorders AMN: adrenomyeloneuropathy, also X-linked, can be late onset Michael Benton showed started showing symptoms in 2006 (age 26); he was on Lorenzo’s Oil for ALD since third grade As of 2011 - on leave from work on long-term disability control of his legs - can drive his car and walk, but “his walk is spastic and muscles are very tight Addison’s Disease (JFK): adrenal glands do not produce sufficient steroid hormones These are produced through fatty acid metabolism, like ALD.

Want to help? The Myelin Project 1400 Wallace Blvd., Suite 258 Amarillo, Texas 79106.

Update: Stem cell research and gene therapy are now the most promising work to save ALD children. 2010: Researchers took blood stem cells from two 7-year-old boys with ALD, infected the cells with a virus carrying a correct copy of the defective gene, then re-injected the stem cells. The boys' symptoms stabilized within 14 months and have not worsened since. Early gene therapy trials were stopped after triggering cancer.