The Myelin Project
Encyclopedia
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
Nerve
A peripheral nerve, or simply nerve, is an enclosed, cable-like bundle of peripheral axons . A nerve provides a common pathway for the electrochemical nerve impulses that are transmitted along each of the axons. Nerves are found only in the peripheral nervous system...

 myelin sheath
Myelin
Myelin is a dielectric material that forms a layer, the myelin sheath, usually around only the axon of a neuron. It is essential for the proper functioning of the nervous system. Myelin is an outgrowth of a type of glial cell. The production of the myelin sheath is called myelination...

, — a process called remyelination
Remyelination
Remyelination is a term for the re-generation of the nerve's myelin sheath, damaged in many diseases such as multiple sclerosis and the leukodystrophies. Remyelination is a subject of active medical research.-External links:**...

— destroyed in a host of diseases such as multiple sclerosis
Multiple sclerosis
Multiple sclerosis is an inflammatory disease in which the fatty myelin sheaths around the axons of the brain and spinal cord are damaged, leading to demyelination and scarring as well as a broad spectrum of signs and symptoms...

 and the leukodystrophies
Leukodystrophy
Leukodystrophy refers to a group of disorders characterized by dysfunction of the white matter of the brain. The leukodystrophies are caused by imperfect growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fibers...

.

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
Lorenzo's Oil
Lorenzo's Oil is a 1992 drama film directed by George Miller. It is based on a true story of Augusto and Michaela Odone, two parents in a relentless search for a cure for their son Lorenzo's adrenoleukodystrophy...

, starring Nick Nolte
Nick Nolte
Nicholas King "Nick" Nolte is an American actor whose career has spanned over five decades, peaking in the 1990s when his commercial success made him one of the most popular celebrities of that decade.-Early life:...

 and Susan Sarandon
Susan Sarandon
Susan Sarandon is an American actress. She has worked in films and television since 1969, and won an Academy Award for Best Actress for her performance in the 1995 film Dead Man Walking. She had also been nominated for the award for four films before that and has received other recognition for her...

, released by Universal Studios
Universal Studios
Universal Pictures , a subsidiary of NBCUniversal, is one of the six major movie 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
Amarillo, Texas
Amarillo is the 14th-largest city, by population, in the state of Texas, the largest in the Texas Panhandle, and the seat of Potter County. A portion of the city extends into Randall County. The population was 190,695 at the 2010 census...

 where it was housed on the Texas Tech University Health Sciences Center
Texas Tech University Health Sciences Center
The Texas Tech University Health Sciences Center offers programs in Allied Health Sciences, Biomedical Sciences, Medicine, Nursing, and Pharmacy. TTUHSC's main campus is in Lubbock, but campuses are also located in Abilene, Amarillo, Dallas, El Paso and the Permian Basin...

 campus in the Laura W. Bush Institute for Women's Research to Pacific Palisades, where it is headquartered in Patricia Chapman's home, current President, Secretary, and volunteer for the Myelin Project, with son Greg as her Executive Assistant. Patti 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
Germany
Germany , officially the Federal Republic of Germany , is a federal parliamentary republic in Europe. The country consists of 16 states while the capital and largest city is Berlin. Germany covers an area of 357,021 km2 and has a largely temperate seasonal climate...

, Italy
Italy
Italy , officially the Italian Republic languages]] under the European Charter for Regional or Minority Languages. In each of these, Italy's official name is as follows:;;;;;;;;), is a unitary parliamentary republic in South-Central Europe. To the north it borders France, Switzerland, Austria and...

, Canada
Canada
Canada is a North American country consisting of ten provinces and three territories. Located in the northern part of the continent, it extends from the Atlantic Ocean in the east to the Pacific Ocean in the west, and northward into the Arctic Ocean...

, the United Kingdom
United Kingdom
The United Kingdom of Great Britain and Northern IrelandIn the United Kingdom and Dependencies, other languages have been officially recognised as legitimate autochthonous languages under the European Charter for Regional or Minority Languages...

, Turkey, 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
Yale University
Yale University is a private, Ivy League university located in New Haven, Connecticut, United States. Founded in 1701 in the Colony of Connecticut, the university is the third-oldest institution of higher education in the United States...

 and the University of Wisconsin–Madison
University of Wisconsin–Madison
The University of Wisconsin–Madison is a public research university located in Madison, Wisconsin, United States. Founded in 1848, UW–Madison is the flagship campus of the University of Wisconsin System. It became a land-grant institution in 1866...

 in the U.S., the Istituto Superiore di Sanità
Istituto Superiore di Sanità
The Istituto Superiore di Sanità , also ISS, is an Italian public institution that, as the leading technical-scientific body of the Italian National Health Service , performs research, trial, control, counseling, documentation and training for public health...

 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
Lorenzo Odone
Lorenzo Michael Murphy Odone was an American adrenoleukodystrophy patient whose parents, Augusto and Michaela Odone, sought a treatment for the disease and invented Lorenzo's oil....

, subject of the movie Lorenzo's Oil
Lorenzo's Oil
Lorenzo's Oil is a 1992 drama film directed by George Miller. It is based on a true story of Augusto and Michaela Odone, two parents in a relentless search for a cure for their son Lorenzo's adrenoleukodystrophy...

.
The film is based on the true story of Augusto and Michaela Odone
Augusto and Michaela Odone
Augusto Daniel Odone and Michaela Teresa Murphy Odone are the parents of Lorenzo Odone , a child afflicted with the illness adrenoleukodystrophy...

 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. The Odones set out on a mission to find a treatment for ALD and to save their child. The movie sympathetically chronicles their passionate search for a treatment to save their son. In their search, the Odones review literature and constantly present new ideas and findings to medical researchers and ALD organization leaders which leads to many heated arguments.

Towards the film's ends, the Odones ultimately 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

  • Adrenoleukodystrophy
    Adrenoleukodystrophy
    Adrenoleukodystrophy is a rare, inherited disorder that leads to progressive brain damage, failure of the adrenal glands and eventually death. ALD is a disease in a group of genetic disorders called leukodystrophies, whose chief feature is damage to myelin...

  • Alexander's disease
  • Adrenomyeloneuropathy
    Adrenomyeloneuropathy
    Adrenomyeloneuropathy is a rare inherited disorder. It is a milder form of X-linked adrenoleukodystrophy . In adrenoleukodystrophy, young children generally exhibit cerebral dysfunction, with rapid progression to dementia and quadriparesis. Adrenomyeloneuropathy progresses more slowly, with...

  • Canavan disease
    Canavan disease
    Canavan disease, also called Canavan-Van Bogaert-Bertrand disease, aspartoacylase deficiency or aminoacylase 2 deficiency, is an autosomal recessive degenerative disorder that causes progressive damage to nerve cells in the brain. Canavan disease is also one of the most common degenerative...

  • Krabbe's disease
  • Metachromatic leukodystrophy
    Metachromatic leukodystrophy
    Metachromatic leukodystrophy is a lysosomal storage disease which is commonly listed in the family of leukodystrophies. Leukodystrophies affect the growth and/or development of myelin, the fatty covering which acts as an insulator around nerve fibers throughout the central and peripheral nervous...

  • Pelizaeus-Merzbacher disease
    Pelizaeus-Merzbacher disease
    Pelizaeus–Merzbacher disease is a rare central nervous system disorder in which coordination, motor abilities, and intellectual function are delayed to variable extents.-Classification:...

  • Phenylketonuria
    Phenylketonuria
    Phenylketonuria is an autosomal recessive metabolic genetic disorder characterized by a mutation in the gene for the hepatic enzyme phenylalanine hydroxylase , rendering it nonfunctional. This enzyme is necessary to metabolize the amino acid phenylalanine to the amino acid tyrosine...

  • Refsum's disease
    Refsum's disease
    Refsum disease, also known as classic or adult Refsum disease, heredopathia atactica polyneuritiformis, phytanic acid oxidase deficiency and phytanic acid storage disease, is an autosomal recessive neurological disease that results from the over-accumulation of phytanic acid in cells and tissues...

  • Transverse myelitis
    Transverse myelitis
    Transverse myelitis is a neurological disorder caused by an inflammatory process of the spinal cord, and can cause axonal demyelination. The name is derived from Greek referring to the "spinal cord", and the suffix -itis, which denotes inflammation...

  • Multiple sclerosis
    Multiple sclerosis
    Multiple sclerosis is an inflammatory disease in which the fatty myelin sheaths around the axons of the brain and spinal cord are damaged, leading to demyelination and scarring as well as a broad spectrum of signs and symptoms...

  • Arachnoiditis
    Arachnoiditis
    Arachnoiditis is a neuropathic disease caused by the inflammation of the arachnoid, one of the membranes that surround and protect the nerves of the central nervous system, including the brain and spinal cord...


External links

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