LorenzosOil

Lorenzo's Oil
A Journey into Genetics and one family's struggle to find a cure for their son

During the struggle to find new ways to make the science of genetics disorders a real and tanglable concept to the students I, very quickly, responded to an ad for a free curriculum based on the 1993 movie Lorenzo's Oil. The movie is based on the Odone's fight to find a cure for their son Lorenzo who become symptomatic for the genetic disorder ALD, Adrenoluekodystrophy. ALD is a genetic disorder passed from mother to son on the X chromosome, making it a X-linked trait. It's victims show signs starting around age 5 or 6 and by age 8 they are dead of the disorder. But not Lorenzo. Through his strength and will and his parents love and determination he is still alive at the age aof 24. His parents, through tireless and endless research, discovered an oil based mixture that slows down the progression of ALD. Today, many young boys are being saved by the oil, discovered by the Odone's.
After responding to the ad, I recieved the kit and proceeded to show the movie, discuss bioethics, learn more about ALD and assign a few projects based on the disorder. Then the Myelin Foundation contacted me about a teleconference with Mr. Odone. I naturally jumped on the chance and said YES. The rest of the story is described by the series of pictures below.

Here are some pictures of my students giving their presentaions on ALD. There were 6 different focuses that the studenst could have choosen. Topics from how ALD affects the nervous system, how the brain works, what is Lorenzo's Oil and how much does it cost to how ALD is passed on. Through their sharing of information, we all learned more about the disorder and it's affect.
The students also wrote letters of encouragment and support to Lorenzo and his father.

Sadly enough, Lorenzo's mother Micheala, died 2 years ago of cancer. The efforts did not stop with letter writting. The students were moved such to do more for the foundation and Lorenzo.

On April 24th, 2003 I ahd the honor of driving to the Myelin Projects headquarters outside of Washington, D.C. Here I presented, in person, Mr. Odone with a check for $215 that my 8th graders collected among themselves. Pictured here is me giving the check to Mr. Odone.
Being able to meet him was, without a doubt, the most inspiring event of my teaching career. Knowing that He has made such an impact on the Scientific Community as he and his wife did and having students be apart of his continued efforts simply brings home what teaching is all about. Here is a man who ahd NO prior knowledge, training, or degree in the sciences and with persistant determination and constant fight from the "professionals" he made such a huge imapct on the treatment of a disorder that affects more than 30,000 people in the U.S. alone. Augusto made a comment to me that just struck me in a weird way. As we were talking he said "I am just a father who has a sick son and will do anything for him." He had many plans for himself and Lorenzo, who could speak 3 languages at age 6. But how things change in life, you never

know what life will deal you next, you simply have to be prepared to go with the hand given. The Odone's have done this now for 18 years, and plan to do so for as long as it takes to find a cure for Lorenzo and others that suffer from myelin dystroying diseases.
I am willing to promise that my support of the Myelin Foundation, Mr. Odone and Lorenzo will not stop here. I plan to keep raising awareness and funds for the Foundation through my teaching. It is the least that can I can do for a man and a family that has given and sacrificed so much already. It is my goal and pledge to make an annual trip to the Foundation and each trip will to be to make a presentation fo a check to Mr. Odone.

Some men talk the dream. Others walk the dream. Still other men create, fullfill and inspire the dream. Augusto Odone, thank you for inpsiring me to live the dream!

For more information on ALD, The Myelin Foundation or ways to help support research on Myelin related disorders please contact the Myelin Foundation at www.myelin.org. Let them know you were just as moved and touched as I am. They do truly appreciate it!!!