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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.
The Myelin Project was established in 1989 with the aim of funding accelerated research on 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.
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 other diseases such as multiple sclerosis. All together, demyelinating diseases affect more than two million people worldwide.
The Myelin Project headquarters has recently moved from Amarillo, Texas where it was housed on the Texas Tech University Health Sciences Center campus in the Laura W. Bush Institute for Women's Research to Pacific Palisades, California. In the interest of keeping administrative costs at a minimum, the Myelin Project no longer has a central office.
Patricia Louisell Chapman, current president of the organization, had two brothers die of rare demyelinating diseases, and currently has a son, Michael, born in 1979, who began developing symptoms of AMN (Adrenomyeloneuropathy) in 2005 at the age of 26.
It has branches in Germany, Italy, Canada, the United Kingdom as well as an active partnership with the European Leukodystrophy Association, headquartered in France. Project President, Patti Chapman, and 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–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
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 was diagnosed with adrenoleukodystrophy (ALD), a rare inherited disease. Doctors said that he would lose all his motor and cognitive functions and die within two to three years. The Odones set out on a mission to find a treatment for ALD and to save their child. The movie chronicles their search for a treatment. In their search, the Odones review literature and constantly present new ideas and findings to medical researchers and ALD organization leaders, leading to many heated arguments.
Towards the film's end, the Odones create Lorenzo's oil and it is shown to improve Lorenzo's condition as Lorenzo regains the ability to communicate via a modified sign language. It is also related that the Odones have founded The Myelin Project which focuses on researching ways to remyelinate neurons in order to cure diseases such as multiple sclerosis. Augusto, now an honorary Ph.D. recipient for his work on the oil, is shown actively searching for possible research for the project.
Conditions of interest
- Alexander's disease
- Canavan disease
- Krabbe's disease
- Metachromatic leukodystrophy
- Pelizaeus-Merzbacher disease
- Refsum's disease
- Transverse myelitis
- Multiple sclerosis
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