Huntington’s and Hope: Seth’s Story, Part 2

Check out part one of Seth’s story here.

Seth had set a google alert for his hometown, Natick, to stay up to date in his home’s local news. One day, he received an alert that let him know TEDxNatick would be hosting an event locally. The theme was “inspire others.” Seth thought he could fit that theme and decided to send in his story. The next thing he knew, he was presenting his own TEDx speech on stage.

Seth had never thought of himself as a great public speaker. He didn’t love to present school projects because he wasn’t an expert in those subjects. When it came to how his family had been impacted by HD, he had lived everything he was talking about.

“I’m an expert in my own personal experience and that’s something everyone has.”- Seth

Seth encourages others to share their stories too, or to get involved in other ways that they might be more comfortable with.

“Some people have said ‘I could never do a TEDx talk’ Well, you can, but you don’t have to go big or go home. You can share your story with one person or start with your friends. You could start a blog and grow from there. Maybe you can reach out to a local news source, get involved in policy work, or organize fundraisers. Once you share your story it is out there, so if you’re uncomfortable you can also just say a friend or family member is impacted, or share something anonymously.”- Seth

Seth had had a harsh introduction to the world of HD but the TEDx experience opened his eyes to the rare disease space as a whole. He found that sharing his video provided a good way to connect to others with various rare genetic conditions. Looking back, he wished he had told himself earlier that his voice was just as important as anyone else’s and that he shouldn’t be afraid to share it.

“Everyone has a story and everyone can be a speaker with time and practice.”-Seth

As Seth has connected to other young people impacted by rare disease, he realized they all have had similar paths. Everyone has their own concerns about how and when to talk to others about their condition, how to navigate romantic relationships, what their future holds, how they can fight back, and finally; how they can get their voices heard.

“Young people are often left out of things and not taken seriously. We are going to be the ones who are involved with these potential treatment and cures. We might potentially be taking the treatments currently under development.”- Seth


Seth is now volunteering on the board of HDYO.

“I shifted my focus into young people because I realized I never had something like HDYO, people to connect with, education, ways to cope. I didn’t have to feel so isolated growing up. At the time, I had no one to talk to who really understood. Someone who has lived the experience can relate a lot better than someone who hasn’t.” – Seth

HYDO is an organization run by young people who believe in the power of connecting other young people to one another. The mission is to support young people impacted by Huntington’s disease worldwide.

“I look back on my life and I had no resources or support. I didn’t know how to grieve; I didn’t know how to talk to people about it. I want to make sure that every young person knows they’re not alone in their fight.” – Seth

Seth has big hopes for the future– namely a cure for every rare disease. A cure for Huntington’s disease.

“I don’t want to worry anymore. I don’t want to say on a date, or to new friends, ‘hey I have this disease. I want a cure for my friends who have HD; who have already been diagnosed. I hope to see more collaboration in the rare disease space among different nonprofits and larger rare disease organizations. I hope to see them come together and collaborate with one another on common initiatives.” –Seth

Seth hopes these goals are achieved sooner rather than later, and he wants to help. He is passionate about the acceleration of research, and helping others understand how drug development works, the costs involved, and awareness around preimplantation genetic diagnosis with IVF for those impacted by hereditary conditions.

Seth has had a busy, remarkable year. He presented his TEDx talk, received his graduate degree, has been traveling to speak and to attend rare disease conferences, and has begun a new job with Inspire. He is not someone to be satisfied with those accomplishments though, he continues to ask himself if he is doing enough, and will continue to strive to do more.

“When you get a passion for something it drives you, it’s something I need to do. To learn more and to try to help others.” – Seth

His one piece of advice to others impacted by rare disease?


“Don’t give up hope, connect with other people, many voices are stronger than one and it all starts with one person” – Seth

Watch his TEDx Talk below:



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