The Myelin Project is
501(c)(3)
A 501(c)(3) organization is a United States corporation, trust, unincorporated association or other type of organization exempt from federal income tax under section 501(c)(3) of Title 26 of the United States Code. It is one of the 29 types of 50 ...
nonprofit organization established in 1989 by
Augusto Odone and his wife, Michaela. Their son,
Lorenzo, suffered from
adrenoleukodystrophy
Adrenoleukodystrophy (ALD) is a disease linked to the X chromosome. It is a result of fatty acid buildup caused by peroxisomal fatty acid beta oxidation which results in the accumulation of very long chain fatty acids in tissues throughout the bo ...
(ALD), the most common of the
leukodystrophies
Leukodystrophies are a group of usually inherited disorders characterized by degeneration of the white matter in the brain. The word ''leukodystrophy'' comes from the Greek roots ''leuko'', "white", ''dys'', "abnormal" and ''troph'', "growth". Th ...
. The story of the Odones' struggle was dramatized in the 1992 film ''
Lorenzo's Oil
''Lorenzo's Oil'' is a 1992 American drama film directed and co-written by George Miller. It is based on the true story of Augusto and Michaela Odone, parents who search for a cure for their son Lorenzo's adrenoleukodystrophy (ALD), leading to ...
''.
The Myelin Project has three branches in the United States, Germany, and the United Kingdom. The Myelin Project's scientific advisory committee includes researchers from
Yale University
Yale University is a private research university in New Haven, Connecticut. Established in 1701 as the Collegiate School, it is the third-oldest institution of higher education in the United States and among the most prestigious in the wo ...
and the
University of Wisconsin–Madison
A university () is an educational institution, institution of higher education, higher (or Tertiary education, tertiary) education and research which awards academic degrees in several Discipline (academia), academic disciplines. Universities ty ...
in the United States, the
Istituto Superiore di Sanità
The ''Istituto Superiore di Sanità'' (Italian National Institute of Health, literally 'Higher Health Institute'), also ISS, is an Italian public institution that, as the leading technical-scientific body of the Italian National Health Service (' ...
and
San Raffaele Hospital
The San Raffaele Hospital (also ''Istituto scientifico universitario San Raffaele'' or ''ospedale San Raffaele'', ''HSR'' or ''OSR'') is a university hospital situated in Segrate, the Province of Milan, Italy. It was founded in 1969 by don Luigi ...
in Italy, the
Hôpital de la Salpêtrière and the
Institute Pasteur
The Pasteur Institute (french: Institut Pasteur) is a French non-profit private foundation dedicated to the study of biology, micro-organisms, diseases, and vaccines. It is named after Louis Pasteur, who invented pasteurization and vaccines f ...
in France,
Queen's University at Kingston in Canada, the
University of Cambridge
, mottoeng = Literal: From here, light and sacred draughts.
Non literal: From this place, we gain enlightenment and precious knowledge.
, established =
, other_name = The Chancellor, Masters and Schola ...
and
University of Edinburgh
The University of Edinburgh ( sco, University o Edinburgh, gd, Oilthigh Dhùn Èideann; abbreviated as ''Edin.'' in post-nominals) is a public research university based in Edinburgh, Scotland. Granted a royal charter by King James VI in 15 ...
in the United Kingdom,
and the
Max-Planck-Institut
The Max Planck Society for the Advancement of Science (german: Max-Planck-Gesellschaft zur Förderung der Wissenschaften e. V.; abbreviated MPG) is a formally independent non-governmental and non-profit association of German research institutes. ...
in Germany.
The project's aims
The Myelin Project aims to advance research, advocacy, and family support for ALD and
adrenomyeloneuropathy
Adrenoleukodystrophy (ALD) is a disease linked to the X chromosome. It is a result of fatty acid buildup caused by peroxisomal fatty acid beta oxidation which results in the accumulation of very long chain fatty acids in tissues throughout the bo ...
(AMN).
The nonprofit is currently run by a president and board of directors.
Patricia Louisell Chapman, current president of the organization, had two brothers die of AMN, and currently has a son, Michael, born in 1979, who began developing symptoms of AMN in 2005 at the age of 26. She was a personal friend of the Odones and was a founding board member of the organization.
See also
Conditions of interest
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Alexander disease
Alexander disease is a very rare autosomal dominant leukodystrophy, which are neurological conditions caused by anomalies in the myelin which protects nerve fibers in the brain. The most common type is the infantile form that usually begins duri ...
*
Canavan disease
Canavan disease, or Canavan-Van Bogaert-Bertrand disease, is a rare and fatal autosomal recessive degenerative disease that causes progressive damage to nerve cells and loss of white matter in the brain. It is one of the most common degenerative ...
*
Krabbe disease
Krabbe disease (KD) (also known as globoid cell leukodystrophy or galactosylceramide lipidosis) is a rare and often fatal lysosomal storage disease that results in progressive damage to the nervous system. KD involves dysfunctional metabolism of ...
*
Metachromatic leukodystrophy
Metachromatic leukodystrophy (MLD) is a lysosomal storage disease which is commonly listed in the family of leukodystrophies as well as among the sphingolipidoses as it affects the metabolism of sphingolipids. Leukodystrophies affect the growth ...
*
Pelizaeus–Merzbacher disease
Pelizaeus– Merzbacher disease is an X-linked neurological disorder that damages oligodendrocytes in the central nervous system. It is caused by mutations in proteolipid protein 1 (''PLP1''), a major myelin protein. It is characterized by a dec ...
*
Phenylketonuria
Phenylketonuria (PKU) is an inborn error of metabolism that results in decreased metabolism of the amino acid phenylalanine. Untreated PKU can lead to intellectual disability, seizures, behavioral problems, and mental disorders. It may also resu ...
*
Refsum disease
Refsum disease is an autosomal recessive neurological disease that results in the over-accumulation of phytanic acid in cells and tissues. It is one of several disorders named after Norwegian neurologist Sigvald Bernhard Refsum (1907–1991). Ref ...
*
Transverse myelitis
Transverse myelitis (TM) is a rare neurological condition wherein the spinal cord is inflamed. The adjective ''transverse'' implies that the spinal inflammation (myelitis) extends horizontally throughout the cross section of the spinal cord; the ...
*
Multiple sclerosis
Multiple (cerebral) sclerosis (MS), also known as encephalomyelitis disseminata or disseminated sclerosis, is the most common demyelinating disease, in which the insulating covers of nerve cells in the brain and spinal cord are damaged. This d ...
*
Charcot–Marie–Tooth disease
Charcot–Marie–Tooth disease (CMT) is a hereditary motor and sensory neuropathy of the peripheral nervous system characterized by progressive loss of muscle tissue and touch sensation across various parts of the body. This disease is the mos ...
*
Arachnoiditis
Arachnoiditis is an inflammatory condition of the arachnoid mater or 'arachnoid', one of the membranes known as meninges that surround and protect the nerves of the central nervous system, including the brain and spinal cord. The arachnoid can be ...
Treatments investigated
*
Lorenzo's oil
''Lorenzo's Oil'' is a 1992 American drama film directed and co-written by George Miller. It is based on the true story of Augusto and Michaela Odone, parents who search for a cure for their son Lorenzo's adrenoleukodystrophy (ALD), leading to ...
References
External links
The Myelin Project's home page
{{DEFAULTSORT:Myelin Project
Medical and health organizations based in California
Neuroscience projects