Seth

Seth Rotberg

About Seth Rotberg

Seth Rotberg is the Partnerships Manager for Inspire. He is also a rare disease advocate and motivational speaker, having presented at the Global Genes Patient Advocacy Summit, TEDxNatick and before a Congressional Caucus, among other venues. Seth’s passion is driven by his mother’s 17 year battle with Huntington’s Disease (HD), a rare neurodegenerative disorder. At the age of 20, Seth also tested positive for the disease and is a gene carrier. An active member of the HD community, he currently sits on the Board of Trustees for the Huntington’s Disease Youth Organization (HDYO). Seth has a masters in nonprofit management from DePaul University and resides in Washington, D.C.

What I told researchers trying to find a cure for my rare disease

What I told researchers trying to find a cure for my rare disease By Seth Rotberg When I was about 12, I started noticing that something was wrong with my mom. She wobbled from poor balance, often tripping and falling over, as if she were drunk. She had severe mood swings; one [...]