“This is my personal struggle and journey to learn about the genetic disease that took my grandfather and my mother,” he writes. “Creutzfeld-Jakob Disease is a 100-percent fatal, untreatable neurodegenerative disease. I now have a 50/50 chance of inheriting the gene responsible for CJD.

“My journey starts with the rapid decline of my mother and takes me across North America as I seek answers from the top doctors and researchers in this field. I share the stories of other families affected by this horrible disease and what they are doing to help find a cure. Together, we march to the Capitol and demand that the Congress provide funding for research and surveillance of the disease. It ends when I discover my results.”