Lorenzo’s Oil Video
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What symptoms of the disease first appeared?
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disturbed, wild behavior-throwing things around
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What medical tests were done to assess Lorenzo's condition?
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Cat scan, EKG, eye tests, hearing test
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What does the doctor first tell Mr. and Mrs. Odone after Lorenzo is diagnosed with ALD?
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die within 2 years, error in metabolism that only affects males ages 5-10, abnormally high fats in blood that collects in nerve cells, enzyme doesn't metabolize the fats, no treatment
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The inheritance pattern for this disease is referred to as...
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x-linked, sex-linked
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Lorenzo inherited the disease from which parent?
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mother
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What is myelin and how is the buildup of molecules affecting the myelin sheath of Lorenzo's neurons?
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fatty sheath that insulates nerves, ALD strips it away
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What two trial studies did Lorenzo's parents try to help their son fight the disease?
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chemotherapy, withdraw saturated fats from diet
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What decision did Lorenzo's parents make about the way they would fight the disease to save their son?
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chemotherapy-risky but decide to make the choice to help Lorenzo
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How was Lorenzo's disease progressing after they did the chemotherapy?
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barely talk, barely walk, not good condition
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What is the attitude of the people in the foundation towards research and new treatments? What is the response of the foundation leader to the ideas of the Odones?
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dismissive, too much to do already, no time, in the dark, think its a good idea but research takes too long
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What opposition do the Odones face from the medical community and caregivers?
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orphan disease-not enough funds for research, hesitant to help
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Augusto Odone makes a model to compare Lorenzo's condition to a kitchen sink. What is the significance of the spigots and drain?
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spigots-fats going in (what he eats), drain-in Lorenzo, enzyme doesn't clean the fats out so the drain does not work (plugged up)
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Michaela found an interesting research article on Polish rats. What was the significance of this research?
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long chain fatty acid manipulation, stopped the rats from producing one kind of fat by loading their diet with another kind of fat
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During a medical conference what ideas are open to discussion on possible solutions to providing a treatment for ALD?
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symposium, oleic acid
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What oil offers a possible solution to Lorenzo's high level of VLCFA? Where did Lorenzo's father get this oil? How did Lorenzo consume the oil?
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oleic acid-principle part of olive oil, has to be in triglyceride form, got it from Protochem in Ohio (1 liter), eats it with dinner through a tube
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How is Lorenzo's response to the oil (first oil) measured? This oil is only partially effective-explain:
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small drop in C24 and C26 of 15% the first month, next month 50%, stays around 50% after that, too low on the chain-need farther up to stop completely
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What does the paper clip model demonstrate to Augusto? What is his dream?
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each clip is 2 carbon atoms, trying to understand relationship between good and bad guys (they affect one another), dream-finds out that it is the same enzyme for both, need to block bad guys further up the chain
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What is the name of the second oil? What plant is it extracted from? What is the medical basis of using this oil?
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Erucic acid, comes from rapeseed, farther up chain to block bad guys earlier
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Who is Lorenzo's 'rat'? Why can the therapy of erucic acid be tested on Michaela's sister or Michaela? Why are the doctors and family concerned about toxicity?
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Michaela's sister is rat, can be tested on them since they are carriers-it helped their blood levels when they tested it
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At this point, what is Lorenzo's condition? How is Lorenzo breathing? (before administration of oil)
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not good-labored breathing, cannot talk, bedridden
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After the administration of the second oil, how does Lorenzo's condition begin to change?
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his levels of C-24 and C-26 read normal, he can swallow-no suction machine
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When the Odones present their findings, how do the parents in the foundation respond? How is the news received in the medical community?
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all the parents want it, medicals says they need to do a trial and get it approved
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Augusto gets a new idea for a cure for ALD from shaking puppies. Explain
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puppies born without myelin-passed from mother to son, implanting nerve cells to see growth in myelin, in time this could work for humans
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How would a cure for the ALD boys offer hope to other neurological conditions?
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being able to remyelinate with nerve cells-help others with brain diseases
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How old does Lorenzo live to be?
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30 (dies day after 30th bday in 2008)
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Genotype for a carrier of the disease (Mom and 2 Aunts)
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XNXA
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Genotype for a person with the disease (Lorenzo)
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XAY
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Genotype for Lorenzo's father (healthy)
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XNY
