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

The disease is Adrenoleukodystrophy referred to as ALD.  The disease only affects boys with an age range of 5 to 10 years old.  It is carried through the mother’s genes and only passed to boys. It affected Lorenzo Aldone.

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

The impact is severe.  It begins with seizures, then magnifies to loss of speech and movement and even swallowing.  

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

I think that the researchers were leery about being more aggressive in their methods.  They knew very little, considering this diagnosis was very new at the time of the movie.  They did not offer any hope to the parents, they told them that all ALD patients die and it was only a matter of time.

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

At the beginning they only wanted to stick to what they were doing because of the unknown dangers that could occur.  Then with more and more proof of the research done by the parents, they were willing to test their findings in hope for a cure.  They become far more aggressive with there research methods.

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

He made a chain of normal paperclips representing the good C2 enzymes, and bent paperclips representing a chain of bad enzymes.  He showed that when making the chains, that when the good enzymes sped up, the bad ones slowed down.  He wondered why two separate enzymes affected each other…. He later realized in a dream that they were the same enzyme for both chains.

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

The last time that his friend saw him he was climbing trees, healthy and happy.  He was afraid he did not realize the magnitude of Lorenzo’s sickness and did not know how it would affect Omari.

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)?

There were two trial oils.  The first one was just the oleic (olive oil) extract by itself.  This was first tested by Lorenzo through a nasal tube.  The second was a combination of the oleic and erucic acid that was first tested by Lorenzo’s aunt Dedra (who is also a carrier) as a salad dressing.

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

The early stages of research were paid for by Lorenzo’s parents through friends and coworkers and mortgages on their home.

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?

No they were not on a single path to this cure.  As they would find new information they would look into it. They began with a diet eliminating the type of fats, they then tried immunosuppressant therapy.  Then researched on their own to find about the C-18 and C-22 oils for treatment. 

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

This movie was not ethical.  Although they found a “cure” in Lorenzo’s oil, they did so by prolonging the suffering of their child.  Although it cured him, some people could look at them and call their trials very unethical.  Everything has a process that has to be completed.  They went outside of the process (and I don’t blame them for doing so) but from the research aspect this was unethical.  Emotions cannot interfere with research and drugs/cures should be tried on other things instead of a child first.  These trials that they put their son through could have been very detrimental to him.