The Myelin Project
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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. It was established in 1989 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. Altogether, demyelinating diseases affect more than two million people worldwide.
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, 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, and Italy, 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 United States, the Istituto Superiore di Sanità and San Raffaele Scientific Institute in Italy, the Hôpital de la Salpêtrière and the Institute Pasteur in France, 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 who suffered from ALD. Lorenzo's parents, Augusto and Michaela, invented a treatment called "Lorenzo's Oil" and subsequently founded The Myelin Project in 1989 to promote and fund myelin research.
Conditions of interest
- Alexander's disease
- Canavan disease
- Krabbe's disease
- Metachromatic leukodystrophy
- Pelizaeus-Merzbacher disease
- Refsum's disease
- Transverse myelitis
- Multiple sclerosis
- Charcot-Marie-Tooth disease