The Myelin Project was a

501(c)(3) A 501(c)(3) organization is a United States corporation, Trust (business), 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 ...

nonprofit organization established in 1989 by Augusto Odone and his wife, Michaela and their friend Patti Chapman. Their son,

Lorenzo Lorenzo may refer to: People * Lorenzo (name) Places Peru * San Lorenzo Island (Peru), sometimes referred to as the island of Lorenzo United States * Lorenzo, Illinois * Lorenzo, Texas * San Lorenzo, California, formerly Lorenzo * Lorenzo State ...

, suffered from

adrenoleukodystrophy Adrenoleukodystrophy (ALD) is a genetic disorder, disease linked to the X chromosome. It is a result of fatty acid buildup caused by failure of peroxisome#Metabolic functions, peroxisomal fatty acid beta oxidation which results in the accumulation ...

(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". ...

. The story of the Odones' struggle was dramatized in the 1992 Hollywood film ''

Lorenzo's Oil ''Lorenzo's Oil'' is a 1992 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 d ...

'', starring actors

Nick Nolte Nicholas King Nolte (; born February 8, 1941) is an American actor. Known for his leading man roles in both dramas and romances, he has received a Golden Globe Award as well as nominations for three Academy Awards and a Primetime Emmy Award. Nol ...

Susan Sarandon Susan Abigail Sarandon (; née Tomalin; born October 4, 1946) is an American actor. With a career spanning over five decades, she is the recipient of various accolades, including an Academy Award and a British Academy Film Award, in addition to ...

and

Peter Ustinov Sir Peter Alexander Ustinov (16 April 192128 March 2004) was a British actor, director and writer. An internationally known raconteur, he was a fixture on television talk shows and lecture circuits for much of his career. Ustinov received #Awa ...

. After 20 years, the Myelin Project was merged into another organization called

ALD Connect ALD or Ald may refer to: Medicine, science and technology * Adrenoleukodystrophy, a disease linked to the X chromosome * Alcoholic liver disease * Aldolase or ALD, an enzyme occurring naturally in animals * Assistive listening device used to im ...

in July 2019. The Myelin Project had three branches, in the United States, Germany, and the United Kingdom. Its scientific advisory committee included researchers from

Yale University Yale University is a Private university, private Ivy League research university in New Haven, Connecticut, United States. Founded in 1701, Yale is the List of Colonial Colleges, third-oldest institution of higher education in the United Stat ...

and the

University of Wisconsin–Madison The University of Wisconsin–Madison (University of Wisconsin, Wisconsin, UW, UW–Madison, or simply Madison) is a public land-grant research university in Madison, Wisconsin, United States. It was founded in 1848 when Wisconsin achieved st ...

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, known in Italian as ''Istituto scientifico universitario San Raffaele'' or ''Ospedale San Raffaele'' (HSR), is a university hospital situated in Segrate, in the province of Milan, Italy. It was founded in 1969 by don L ...

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 university, public collegiate university, collegiate research university in Cambridge, England. Founded in 1209, the University of Cambridge is the List of oldest universities in continuous operation, wo ...

and

University of Edinburgh The University of Edinburgh (, ; abbreviated as ''Edin.'' in Post-nominal letters, post-nominals) is a Public university, public research university based in Edinburgh, Scotland. Founded by the City of Edinburgh Council, town council under th ...

in the United Kingdom, and the

Max-Planck-Institut The Max Planck Society for the Advancement of Science (; abbreviated MPG) is a formally independent non-governmental and non-profit association of German research institutes. Founded in 1911 as the Kaiser Wilhelm Society, it was renamed to the M ...

in Germany.

The project's aims

The Myelin Project aimed to advance research, advocacy, and family support for ALD and

adrenomyeloneuropathy Adrenomyeloneuropathy (AMN) is a rare hereditary neurodegenerative disorder that primarily affects the spinal cord and peripheral nerves, occurring in less than 1 in 40,000 people. It is characterised by progressive motor dysfunction and adrenal i ...

(AMN). The nonprofit was run by a president and board of directors. Patti Chapman, who was the president of the organization during its entire duration and since 2019 has been a board member of ALD Connect, had two brothers die of AMN, and had a son, Michael, born in 1979, who began developing symptoms of AMN in 2005 at the age of 26. Her son died in . She was a personal friend of the Odones and a founding board member of the Myelin Project.

References

{{DEFAULTSORT:Myelin Project Medical and health organizations based in California Neuroscience projects

The project's aims

See also

Conditions of interest

Treatments investigated

References