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The Myelin Project is 501(c)(3) 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 b ...
(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 t ...
''. 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 university, private research university in New Haven, Connecticut. Established in 1701 as the Collegiate School, it is the List of Colonial Colleges, third-oldest institution of higher education in the United Sta ...
and the
University of Wisconsin–Madison A university () is an institution of higher (or tertiary) education and research which awards academic degrees in several academic disciplines. Universities typically offer both undergraduate and postgraduate programs. In the United Stat ...
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 in France, Queen's University at Kingston in Canada, the
University of Cambridge The University of Cambridge is a public collegiate research university in Cambridge, England. Founded in 1209 and granted a royal charter by Henry III in 1231, Cambridge is the world's third oldest surviving university and one of its most pr ...
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 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 genetic disorder, disease linked to the X chromosome. It is a result of fatty acid buildup caused by peroxisome#Metabolic functions, peroxisomal fatty acid beta oxidation which results in the accumulation of very lo ...
(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

* Alexander disease *
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 Friedrich Christoph Pelizaeus, Pelizaeus–Ludwig Merzbacher, 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 maj ...
*
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 re ...
*
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 Inflammation, inflamed. The adjective ''wikt:transverse#Adjective, transverse'' implies that the spinal inflammation (myelitis) extends horizontally throughout ...
* Multiple sclerosis *
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 most ...
*
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 t ...


References


External links


The Myelin Project's home page
{{DEFAULTSORT:Myelin Project Medical and health organizations based in California Neuroscience projects