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Prion scientist, Broad Institute; Co-Founder at Prion Alliance
In late 2011, Sonia Vallabh learned that she had inherited a fatal mutation that causes genetic prion disease. The previous year, she and her husband Eric Minikel had watched Sonia’s mother die of this rare neurodegenerative disease, rapidly losing her ability to communicate, walk, feed herself, and recognize her loved ones. She passed away within months, at the age of 52.
Genetic prion diseases are universally fatal and currently untreatable. Onset ranges from age 18 to 80, but is usually in midlife. At the time they received this news, Sonia and Eric were in completely non-scientific fields: Sonia was a recent law school graduate, and Eric was an urban planner. In the wake of their genetic test report, the couple embarked on an educational crusade, reading about prion diseases, meeting researchers, and enrolling in biology night classes. They left their careers for research jobs at Massachusetts General Hospital. In mid-2012 they founded Prion Alliance with the mission of facilitating the development of a treatment or cure for prion diseases, by raising funds for research, advocating, and connecting patients and researchers.
In fall 2014, Sonia and Eric both began their PhDs at Harvard Medical School. Today, Sonia and Eric work side by side at the Broad Institute of MIT and Harvard where, together with a team of allies and advisors, they have launched a new initiative to discover a treatment for prion disease. In February 2016, Sonia was honored to share her and Eric's journey with President Obama upon the one-year anniversary of the Precision Medicine Initiative. You can view their conversation here.
More information about Sonia and Eric:
• Prion Alliance and how to support the cause: www.prionalliance.org
• The Prions@Broad initiative at the Broad Institute: broad.io/prions
• "A husband and wife's race to cure her fatal genetic disease," Kathleen Burge, Boston Globe Magazine, February 17, 2016.