Kenneth P. Serbin’s mother Carol died of Huntington’s disease in 2006 after a 20-year battle against the disease. Serbin tested positive for the HD gene in 1999. His daughter Bianca tested negative for HD in the womb and is today a healthy 21-year-old college senior.
Since 1998, Serbin has served as a volunteer advocate for the Huntington’s Disease Society of America (HDSA). Adopting the pseudonym “Gene Veritas,” in January 2005 he started the blog “At Risk for Huntington’s Disease”, where he has posted more than 300 articles on numerous medical and social facets of the disorder and the quest for treatments.
Starting in 2007, he initiated the effort in California to obtain funding for HD research from the state’s world-leading stem cell institute. In 2011, he was named the HDSA Person of the Year. In 2012, Serbin went public about his gene-positive status with his article “Racing Against the Genetic Clock,” in The Chronicle of Higher Education.
On May 18, 2017, Serbin and his family joined Huntington’s advocates from around the globe at a special audience in Rome with Pope Francis, who declared Huntington’s “hidden no more.” A professor at the University of San Diego, he researches Brazilian social, cultural, political, and religious history and the history of science, technology, and medicine.
He is currently researching the history of the Huntington’s disease movement in the context of the biomedical revolution. He lives with his wife Regina in San Diego.