The Myelin Project
{{Short description|Medical research and advocacy organization}}
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The Myelin Project was a 501(c)(3) nonprofit organization established in 1989 by Augusto Odone and his wife, Michaela and their friend Patti Chapman. Their son, Lorenzo, suffered from adrenoleukodystrophy (ALD), the most common of the leukodystrophies. The story of the Odones' struggle was dramatized in the 1992 Hollywood film Lorenzo's Oil, starring actors Nick Nolte, Susan Sarandon and Peter Ustinov. After 20 years, the Myelin Project was merged into another organization called ALD Connect in July 2019.{{cite web |first=Patti |last=Chapman |url=https://aldconnect.org/about-us/the-myelin-project/ |title=Dear Supporters |date=July 26, 2019 |access-date=July 21, 2021 |archive-date=July 21, 2021 |archive-url=https://web.archive.org/web/20210721165957/https://aldconnect.org/about-us/the-myelin-project/ |url-status=live }}.
The Myelin Project had three branches, in the United States, Germany, and the United Kingdom. Its scientific advisory committee included researchers from Yale University and the University of Wisconsin–Madison in the United States, the Istituto Superiore di Sanità and San Raffaele Hospital{{cite web | url=http://myelin.org/scientific-advisory-committee/ | title=Our Advisors | publisher=The Myelin Project | accessdate=September 28, 2016 | archive-date=October 2, 2016 | archive-url=https://web.archive.org/web/20161002082443/http://myelin.org/scientific-advisory-committee/ | url-status=dead }} in Italy, the Hôpital de la Salpêtrière and the Institute Pasteur in France, Queen's University at Kingston in Canada, the University of Cambridge and University of Edinburgh 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.{{cite web|title=Our Team|url=http://myelin.org/our-team/|website=The Myelin Project|accessdate=1 March 2017|archive-date=2 March 2017|archive-url=https://web.archive.org/web/20170302193636/http://myelin.org/our-team/|url-status=dead}} 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 {{Death year and age|2020|1979}}.{{cite web |url=https://aldconnect.org/board-of-directors-info/ |title=Board of Directors |website=ALD Connect |date=29 September 2022 |access-date=November 4, 2023 |archive-date=4 November 2023 |archive-url=https://web.archive.org/web/20231104180554/https://aldconnect.org/board-of-directors-info/ |url-status=live }} She was a personal friend of the Odones and a founding board member of the Myelin Project.
See also
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References
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Category:Medical and health organizations based in California