1. Lorenzo’s Oil

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

3. 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

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

5. 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.

6. Oumouri, Augusto, and Lorenzo

7. 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

8. 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.

9. 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)

10.
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.

11. 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.

12. 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.

13. Erucic Acid The main component of rapeseed oil

14. ALD – Oil increases harmless VLCUFA production

15. 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

16. An animation
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17. Related disorders
AMN: adrenomyeloneuropathy, also X-linked, can be late onset
Michael Benton showed started showing symptoms in (age 26); he was on Lorenzo’s Oil for ALD since third grade
As of 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.

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

19. 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.