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, 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. 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, Susan Sarandon 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 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 and San Raffaele Hospital 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 in Germany.

The project's aims

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