Gene Veritas


Manage episode 232524748 series 1076406
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Gene Veritas – whose real name is Kenneth P. Serbin – has been active in the Huntington’s disease community since his mother’s diagnosis with the disease in 1995. She died of HD in 2006 after a 20-year fight. Serbin tested positive for the HD gene in 1999. His daughter Bianca tested negative in the womb and is today a healthy 18-year-old college student. Since 1998, Serbin has served as a volunteer advocate for the Huntington’s Disease Society of America (HDSA). He adopted the pseudonym “Gene Veritas” in January 2005, when he started the blog “At Risk for Huntington’s Disease” ( He has posted 270 articles on numerous aspects of HD, its social impact, and the quest for treatments. In 2007, he helped initiate the effort in California to obtain funding for HD research from the state’s world-leading stem cell institute. In 2011, Serbin came out about his gene-positive status by keynoting the 6th annual HD Therapeutics Conference, sponsored by CHDI Foundation, Inc. That year he was also named the HDSA Person of the Year. In 2012, he went fully public, publishing the essay “Racing Against the Genetic Clock” in The Chronicle of Higher Education. In 2017, Serbin, his wife Regina, and daughter Bianca participated with HD families from around the world in #HDdennomore, Pope Francis’ special audience with the HD community at the Vatican in Rome. A scholar of Brazilian history, Serbin has also collaborated with advocates for the Associação Brasil Huntington (Brazilian Huntington’s Association). Serbin is a professor in the Department of History at the University of San Diego.

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