1.      What was the primary disease in this movie and whom did it affect?

X-linked adrenoleukodystrophy (X-ALD): an extremely rare incurable degenerative brain disorder. It affected the son, Lorenzo.

2. How would you classify the disease' impact on the patients functional status..mild, moderate or severe, and why?

I would classify the impact on the patents functional status to be severe. It seemed to be very hard mentally and emotionally to find out your child has a disease and the doctor doesn’t seem to want to help you understand it. It definitely affected their lives by researching day in and day out trying to find a cure for there child.

3. In your opinion, how did the research doctors regard Lorenzo's parents?

They didn’t seem to help them understand want there son was going though or what’s to come. They acted like they was no hope and no cure for there son. I thought this was very disrespectful.

4. "The roles of the researchers were juxtaposed or changed in this movie." Explain why this is true.

At first, the researchers were the ones doing all the research and test and the Odones were the ones listening. In the end the Odones ended up doing all the research and the researchers were the ones learning and worked alongside them to further there research.  

5. Dad had a breakthrough at the library - explain the paperclip analogy/model.

The dad's breakthrough in the library was amazing.  Each paper clip equaled 2 carbon atoms.  These would connect to other carbon atoms in chains, such as C2-C4-C6.  These chains where trying to make mono saturated fats.  One chain was considered the "good guys" and one chain was considered the "bad guys".  The dad said that he was the "good guy enzyme" and took a carbon and put it on his chain, while Deidra was the "bad guy enzyme" and put a carbon on her chain. This was done at the same rate.  He began to realize that the faster the "good guys" went, the slower the "bad guys" went. The same enzyme was used for both chains. Then he found that if you kept the enzymes busy by making monosaturates you could distract the saturate fats from making elongated chains.  The reason that the oleic acid was partly successful was because it stopped the chain at C-18.  They had to have a 2nd barrier to be able to stop the chains from former between C-22 and C-24.  He found out this could be done by the patient ingesting rapeseed oil, or erucic acid.  He believed this would inhibit the actions of the disease.

6. Dad was concerned when Lorenzo's friend came from Africa to live with the Odone’s and care for Lorenzo. What was Dad's primary concern?

Since his friend hadn’t seen Lorenzo in a long time and he was acting like a normal child when he last saw him. He thought that Omore would be shocked and not able to deal with the condition that Lorenzo was currently in.

7. Who was the first human subject to consume the oil and how was it dosed and administered through what portal (ingested, injected, absorbed, inhaled, or other)?

The first subject to consume the oil was Mrs. Odone's sister, Deidra.  She ingested it on a salad at the dose of 8g.

8. What is the role of money in this research product? Who paid for most of the early groundbreaking research?

The role of money in this research was to pay for all testing to be done on the new acids. It also paid for further research to be done on kids with ALD.  Most of the groundbreaking research was paid for by the Odone’s and later by some of the other parents of kids with ALD.

9. The critical mass theory suggests that multiple researchers conclusively find (or frequently stumble upon) an answer to a scientific inquiry. Were the researchers on a single path to finding a cure for this disease?

In my opinion, they were not on a single path. They were all trying to figure out what would stop the symptoms and problems of ALD, but they were all going about it in their own ways without wanting to really pay attention to other ideas.  If they had been able to put there ideas and research together into a single pathway, I feel that the research wouldn’t have taking as long.

10. Consider ethics for a moment. Does this movie represent an appropriate ethical model for research? Defend your answer.

I think it does. Dealing with ethics you take into account morals and what is believed as right or wrong.  To the Odone's their research and attempts to keep Lorenzo alive was well worth every minute, not only for them but for other kids and families dealing with ALD, which gave them hope.  To all the nurses and researchers they saw the Odone's attempts as wrong to Lorenzo.  They seemed to think that by keeping Lorenzo alive was only prolonging his suffering. This movie definitely ethical and has many different views of right or wrong. It would be a great movie to represent ethical model for research.