Posted by Willow on August 11, 2001, at 19:17:39
It talks about the need to educate ourselves.
http://toronto.globaltv.com/ca/entertainment/news/stories/news-87397120010716-110713.htmlStill Fighting For Lorenzo
Benefit Concert The Latest Step In Father's Tireless Battle For Son's Life
Suzanne Ellis, Staff Writer
July 24, 2001, 10:08 a.m. EDT
TORONTO -- In 1992, the film Lorenzo's Oil introduced the world to a young Italian boy diagnosed with a rare degenerative disorder, and the devoted parents who fought to keep him alive despite a grim prognosis.Starring Susan Sarandon and Nick Nolte, the poignant film was nominated for two Academy Awards (Best Actress, Best Original Screenplay) -- but more important, it raised people's awareness of the genetic disorder Adrenoleukodystrophy (ALD) and the imperative to find a cure for it.
Despite the belief he'd die shortly after being diagnosed at age five, Lorenzo Odone has endured, and recently turned 23. His father Augusto Odone -- whose tireless efforts to raise money for research recently brought him to Toronto to promote an upcoming benefit concert called Making A Difference -- says he's away from his son as little as possible.
"I clip his beard every week," says Odone with affection.
Augusto will be on hand for the first ever Making A Difference concerts Aug. 17 and 18 at the Living Arts Centre in Mississauga, Ont., featuring Italian pop/opera sensation Filippa Giordano in her Canadian debut. Proceeds go to The Myelin Project, a foundation formed by Odone to help raise research funds for both his son's affliction and related demyelinating disorders.
Myelin is white matter coating the body's nerves, allowing impulses to travel from the brain to other parts of the body and vice versa. Hereditary disorders such as the different forms of leukodystrophy and acquired diseases such as multiple sclerosis are referred to as demyelinating disorders because they destroy that protective coating.
The debilitating effects of the hereditary demyelinating disorders (including ALD, the form affecting Lorenzo) include blindness, deafness, loss of speech and movement, and the prognosis is generally death within a few years.
"Myelin is similar to the coating of an electric wire. When it loses insulation, it cannot conduct electricity and sometimes short-circuits. Without myelin the brain cannot transmit or receive messages to or from other parts of the body," Odone explains.
The Odones, in their fight to keep Lorenzo alive, read every study published on the illness, and came up with a remarkable oil -- a combination of olive and rapeseed oils -- that seemed to halt the progress of the disease in their son. Doctors were skeptical of its effects.
"There wasn't too much backlash initially, but when the film came out there were some very mean, sharp articles in a good number of medical journals," Odone says. "They were saying that the oil was no good, that it had side effects, in their desire to put down something that a non-doctor had beaten them to."
Soon families of ALD patients began requesting it, and clinical studies showed that the treatment worked in about half the cases if the patient took the oil in the early stages of the disease. It's been administered to about 1,000 patients over the years. Odone says the film was probably the most significant step in their fight for ALD therapy, not only in terms of awareness for the rare disease, but in terms of the lessons it taught."It showed patients what can be accomplished when they're proactive," he says. "They don't have to believe what the first doctor they speak to tells them, because the best doctors don't necessarily live in your town. It taught patients not to be afraid of asking what they perceive to be dumb questions. It also taught the importance of bringing yourself up to understand the basic concept of whatever disease you're affected with."
Last year Michaela Odone succumbed to lung cancer at the age of 61. Augusto has continued on in the fight for medical advances in reversing the progress of ALD, and says he's not exactly alone. In recent months, two people have been a tremendous help in caring for Lorenzo -- an Ethiopian housekeeper who prepares Lorenzo's complicated diet, and Oumouri, a family friend who is now one of Lorenzo's primary caregivers.
Next month's Making A Difference benefit should add to the $5 million already raised by The Myelin Project for research and experiments. Half a million of that is going toward an upcoming experiment at Yale University Medical School, the first ever attempt to transplant myelin-producing cells in a human patient. If the cells take, it will be a huge step in combatting the disorder, and may even help Lorenzo battle back from his current condition.
"If it's successful, we'll have a big celebration with champagne," Odone says, crossing his fingers. "Once you open a window, once the experiment is proven successful, other institutions will want to do the same thing."
Making A Difference: Benefit Concert For The Myelin Project
Featuring Filippa Giordano with special guests Pavlo (Friday) and Robert Michaels (Saturday)
August 17 & 18, 2001
The Living Arts Centre, Mississauga, Ont.
Tickets range from $49.50 to $69.50
To order: (905) 306-6000 or 1-888-805-8888
poster:Willow
thread:74676
URL: http://www.dr-bob.org/babble/20010809/msgs/74676.html