The Myelin Project

From Wikipedia, the free encyclopedia

 This article or section is written like an advertisement.
Please help rewrite this article from a neutral point of view.
Mark blatant advertising which would require a fundamental rewrite in order to become encyclopedic for speedy deletion, using {{db-spam}}. (May 2008)

The Myelin Project is an international scientific research organization aimed at accelerating clinical and translational research focused on myelin repair and to regenerate the nerve's myelin sheath, — a process called remyelination — destroyed in a host of diseases such as multiple sclerosis and the leukodystrophies.

Contents

[edit] The Myelin Project

The Myelin Project was established in 1989 with the aim of funding accelerated research on the demyelinating diseases, such as the leukodystrophies and multiple sclerosis. The organization was founded by Augusto Odone and his late wife, Michaela. Their son, Lorenzo, suffered from X-linked adrenoleukodystrophy (X-ALD), the most common of the leukodystrophies. The story of the Odones' struggle was dramatized in the film “Lorenzo's Oil”, starring Nick Nolte and Susan Sarandon, released by Universal Studios in 1992.

[edit] The project's aims

The Myelin Project aims to accelerate research on myelin repair. Myelin can be destroyed by hereditary neurodegenerative disorders such as the leukodystrophies, and by acquired diseases such as multiple sclerosis. All together, demyelinating diseases affect more than two million people worldwide.

The Myelin Project headquarters has recently been moved to Amarillo, Texas where it is housed on the Texas Tech University Health Sciences Center campus in the Laura W. Bush Women's Research Center. The Myelin Project has branches in Germany, Italy, Canada and the United Kingdom as well as an active partnership with the European Leukodystrophy Association, headquartered in France. Project President, Margaret Weis, receives minimal compensation, members of the Board receive no compensation. In Britain, France, Germany, Italy and Canada, Project Board members are also volunteers.

Using a motivated, time-conscious approach to attain specific goals, The Myelin Project has set up a Work Group from among the top international laboratories specializing in myelin repair. The Work Group includes researchers from Yale University and the University of Wisconsin at Madison in the U.S., the Istituto Superiore di Sanità and San Raffaele Scientific Institute in Italy, the Hôpital de la Salpêtrière and the Institute Pasteur in France, the Queen's University at Kingston in Canada, the University of Cambridge in the United Kingdom, and the Max-Planck-Institut in Germany.

The Myelin Project targets its funds toward clinically oriented experiments on the cutting edge of remyelination research. Basic research and studies directed toward the advancement of science for science's sake are excluded from Project financing

[edit] Inspiration The Story of Lorenzo's Oil

The project was inspired by the real-life case of Lorenzo Odone, subject of the movie Lorenzo's Oil. The film is based on the true story of Augusto and Michaela Odone and their son Lorenzo. In 1984 Lorenzo came down with adrenoleukodystrophy (ALD), a rare inherited disease. Doctors said that he would lose all his functions and die within two to three years. Refusing to accept this grim verdict, the Odones set out on a mission to find a treatment for ALD and to save their child (Lorenzo survived more than 20 years longer than what doctors had first told his parents. Lorenzo Odone lost his battle with ALD on May 30, 2008, one day after his 30th birthday). He passed away in his sleep at home in Fairfax, VA with his father Augusto and his life-long friend Omouri Hassane at his side. Lorenzo Odone was the oldest survivor of adrenoleukodsytropy In their quest for a treatment the Odones often clashed with doctors, scientists, and support groups, who were skeptical that anything could be done about ALD, much less by laypeople. Their relentless struggle tested the strength of their marriage, the depth of their beliefs, and the boundaries of conventional medicine.

The Odones haunted medical libraries, reviewed countless animal experiments, badgered researchers, questioned top doctors all over the world, and persisted until a solution came to them in a moment of inspiration. They commissioned a special type of oil from a British firm, which normalized the accumulation of very long chain fatty acids in the brain, the hallmark of ALD.

The film ends on a positive note, showing several healthy children who, having followed a course of treatment with Lorenzo's Oil, remained symptom-free. The conclusion relates that Lorenzo can communicate again by a modified sign language, and that Augusto Odone was awarded an honorary Ph.D. for his pioneering work in researching and discovering a significant treatment for ALD.

In the second chapter of the story, the Odones founded The Myelin Project in the hope of finding a way to restore the myelin sheath, which is destroyed in ALD and a host of other myelin diseases, such as multiple sclerosis. If this vital substance can be restored, patients like Lorenzo may regain function and eventually lead a normal life

[edit] Links

[edit] Conditions of interest

[edit] Treatments investigated

[edit] External links