Seth found out as a 15-year-old 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; also being described as having ALS, Alzheimer’s and Parkinson’s all at once. There is currently no cure.
Five years later, Seth decided to go through genetic testing and found out he tested positive for HD, just like his mom. At that point he knew he had two options; he could let the disease dictate his life or could use the results as motivation to fight back. He chose the latter, immediately getting more involved in the community through fundraising, advocacy, and volunteer efforts.
From 2011 – 2015, Seth served on the boards for the HDSA National Youth Alliance (NYA) and HDSA Massachusetts Chapter to continue his efforts in the HD community. He became the President of the HDSA NYA in 2012 and HDSA Massachusetts Chapter in 2013, where he led a group of dedicated volunteers to plan and execute fundraising and educational events.
Seth is still an active member of the HD community and currently sits on the Board of Trustees for the Huntington’s Disease Youth Organization (HDYO). As a member of the working board, he connects young people to the proper social, emotional, and educational resources needed when coping with HD. His hope is to be a mentor for young people who face adversity by sharing how taking control of his HD journey has given him opportunity, fulfillment, and hope.
Besides his efforts in the HD community, he has also volunteered and worked for a variety of youth development nonprofit organizations, including City Year Boston (from 2013 – 2014) and Boston Scholar Athletes (from 2014 -2016).
More About Seth:
Seth was born in Boston, Massachusetts and raised in nearby Natick. He went to college at UMass Amherst, where he obtained a Bachelor of Science degree in sport management with a minor in economics.
In 2018, Seth obtained his Master’s in Nonprofit Management at DePaul University. After completing his Master’s degree, he moved to Washington DC to start a job as Partnerships Manager for the health company Inspire, the leading social network for health that connects over 1.4 million patients and caregivers to one another anonymously.
In 2015 he received the HDSA Youth of the Year Award. The following year, the Boston Celtics recognized him as a recipient of their Heroes Among Us program. In 2018, he was recognized as a Champion of Hope Nominee for Global Genes.