“I met Seth for the first time at the HDSA Connecticut Annual Education Conference. As a new person to the community, I didn’t know anyone and was nervous about being at the event. Seth approached and introduced himself and spoke with openness and bravery about his experience with HD. It was during his talk about turning challenges into opportunities that I realized that this “community,” one which I’d never wanted to be a part of given the circumstance, was more than just that! He made the outlook of this disease seem promising and a great opportunity to be involved in the mission to find a cure. Seth is an amazing speaker and positive influence, and an exemplary advocate for the community. He makes the fight seem easy and fearless!”

– Young adult impacted by HD

“We had the opportunity of having Seth Rotberg speak about “Turning Challenges into Opportunities” at our 2018 HDSA CT Affiliate Education Symposium on April 7th. Participants had a choice of going to Seth’s session or another session in the same time slot. Most of the attendees chose to listen to Seth. Due to technical difficulties he couldn’t use his PowerPoint presentation, but this didn’t affect his powerful message. Seth is a brave, inspiring young adult who is sharing his personal story to help others make the most of their lives.  I would recommend him as a speaker at any event for both youth and adults. His message will make a difference in your life.”

– Susan McGann, MSW (HDSA CT Affiliate Chair)

“The University of Chicago Comer Children’s Hospital had the opportunity to welcome Mr. Seth Rotberg to our Morning Report session as part of our monthly Pediatric Ethics series.  Seth shared with us his path from learning that his mother had Huntington’s Disease to his decision to get involved with the Huntington’s Disease community and his decision, as a young adult, to get tested himself.  He offered a powerful narrative that engaged Pediatrics physicians at many levels of training, from medical students to interns to more experienced house staff and attendants.  He helped us to appreciate the meaning of genetic testing for a chronic disease like Huntington’s Disease, and he described both the positive and negative aspects of his experience and how the process can be improved.  Seth was frank, honest, and genuinely interested in the advancement of medical education, and physician-patient communication.  He helped us appreciate the importance of communicating and supporting patients and families beyond ordering tests, reporting results, and prescribing medications.  He candidly answered questions from our house officers and expert ethicist and helped us gain a deeper understanding of the complexities of decision making around genetic testing in order that we can be more compassionate and supportive of patients and families who must choose whether and when to undergo testing and then learn how to live with the results.  On behalf of our pediatric ethics and pediatric house staff, we express our gratitude that Seth was willing and able to share his experiences, his lessons, and his guidance.”

– Vincent DiMaggio, MD (Chief pediatric resident, Comer Children’s Hospital, University of Chicago

– Lainie Ross, MD, PhD (Carolyn and Matthew Bucksbaum Professor of Clinical Ethics, University of Chicago)