At the age of 15, Seth learned that his mom had a rare, neurological, genetic disease known as Huntington’s Disease (HD). HD slowly deteriorates a person’s physical and cognitive abilities and each child of a parent with the disease has a 50/50 chance of inheriting it. Five years later Seth tested positive for HD and this inspired him to take action. He dedicated much of his time to fundraising and advocacy efforts, where he later got involved with the HDSA National Youth Alliance and the Huntington’s Disease Youth Organization (HDYO)—two HD youth organizations that support and connect young people impacted by HD to one another. Through the peer support he was provided, it has made him a stronger, healthier, and smarter patient advocate.
However, Seth felt a sense of isolation in the years after learning about his mother’s condition, which were difficult for him before finding his HD community. Although his friends and family were supportive, they didn’t truly understand what he was going through and he felt different from everyone else. During his advocacy work, he learned that young adults impacted by other rare and chronic conditions were dealing with similar challenges to those he faced. These young adults with various conditions spent years isolated, misunderstood, and needed more year-round support than was currently being offered.