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Lorenzo's Oil Message Board


Jennifer a UVSC student posts a message on 2/5/2006 9:45:48 PM I am currently a UVSC student in nursing school. We were given the option to view the movie and give our reaction to it. My heart goes out to the family. It is such a terrible tradgety for anyone to experiance. I believe that we are defined by the way that we handle situations we are placed in. Lorenzo has truely great parents. They are an inspiration to me. From the nursing standpoint I learned from this movie that it is very important to be a patient advocate, and not be satisfied with what is known. Research is forever changing and there is always possibility.
Jim in Texas posts a message on 1/31/2006 7:28:26 PM I just saw Lorenzo's Oil and felt some past emotions surface. I lost a daughter in 2000 due to an abnormality of the 23 chromosome. Christina was born with severe physical and mental disfunctions, and lived 16 years in a state similar to Lorenzo. She never walked, talked and was finally on a trach and feeding tube. I'm personally familar with all that Lorenzo's parents experienced regarding his care and state of mind. I want to express my sincere admiration for their devotion and never ending pursuit to cure their son. I, myself, wish I could have done more for my daughter Christina; however, she was the true warrior over the years. My prayers to Lorenzo to continue his fight, and to his father to continue his pursuit to help others. You are both true heros in my eyes. May God assist both of you.
Texas posts a message on 1/27/2006 8:24:11 AM Lorenzo celebrated his 27th birthday on May 29, 2005. He is deprived of most of his functions, but his mind is still there. Lorenzo communicates through blinking his eyelids to say no and wiggling his fingers to say yes. He enjoys music and being read to. Lorenzo will not regain his speech or full mobility until we are successful with remyelination. Michaela succumbed to cancer in June 2000. Augusto, who continues the fight for his son, works out of his office at Myelin Project Headquarters located in Dunn Loring, Virginia, just outside of Washington D.C. Lorenzo likes to receive mail from his “friends” and well-wishers. You may write to him c/o The Myelin Project, 2136 Gallows Road, Suite E, Dunn Loring, Virginia 22027.



Texas posts a message on 1/27/2006 8:23:04 AM Lorenzo celebrated his 27th birthday on May 29, 2005. He is deprived of most of his functions, but his mind is still there. Lorenzo communicates through blinking his eyelids to say no and wiggling his fingers to say yes. He enjoys music and being read to. Lorenzo will not regain his speech or full mobility until we are successful with remyelination. The Odones: Augusto, Michaela, and Lorenzo at home in Chevy Chase, Maryland, 1985 Michaela succumbed to cancer in June 2000. Augusto, who continues the fight for his son, works out of his office at Myelin Project Headquarters located in Dunn Loring, Virginia, just outside of Washington D.C. Lorenzo likes to receive mail from his “friends” and well-wishers. You may write to him c/o The Myelin Project, 2136 Gallows Road, Suite E, Dunn Loring, Virginia 22027.
Joshua Rios posts a message on 1/25/2006 9:02:27 AM I saw the movie last week in my bio class and my teacher said that if anyone could tell her where Lorenzo is today, then she would give them some extra credit...i am not doing so good in that class at the moment so i decided to take the opportunity to try and find some thinks about Lorenzo...i was wondering where he is today and how he is doing.
fely posts a message on 1/24/2006 7:37:37 PM I'm a young mother and I've just watched the movie last night . I'm really curious. How is Lorenzo now? How old is he? How is the project progressing?
Kevin posts a message on 1/23/2006 3:10:20 PM I saw the movie for the first time and I can't stop thinking about Lorenzo and wanting to know how he's doing. Can anyone share with me how he's doing and how ongoing research has progressed?
Cindy posts a message on 1/22/2006 5:54:48 PM Thank you so much. With your help I found my way.
Kathy posts a message on 1/22/2006 12:23:56 PM Cindy - try www.myelin.org (use only one "l") and you should find the site.
Cindy posts a message on 1/22/2006 12:10:33 PM It is making me crazy that I can't find the site you are talking about. I typed in what was posted here and all I find is a portal to further search and it comes up empty. So can someone who knows the exact URL paste it here so I can find it. I am feeling rather stupid. Thank you so much.
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