Carrying the burden of a rare genetic gene drove Seth Rotberg to a life helping others

He was just 20 years old when he learned his future would be cut short by the same disease that was robbing life from his mother. Seth Rotberg carried that burden alone, until a pair of tragedies showed him the time he had left was best spent honestly and in service to others. 

A decade ago, Seth found out he had inherited the gene that leads to Huntington’s disease. The rare, progressive breakdown of the nerve cells inside the brain is characterized as a cruel combination of ALS, Parkinson’s and Alzheimers – all at once. Huntington’s is the quintessential family disease. Every child of a parent with the disorder has a 50-50 chance of inheriting the faulty gene.

Seth was thrust into being a rare disease family member and caregiver at 15 years old when his mom, Debbie, was diagnosed. As he watched her struggle and saw how it impacted their family, Seth couldn’t help but wonder if this was just a foreshadowing of his own future.

“The majority of people don’t get tested prior to showing the symptoms,” Seth said of the disease that usually manifests between the ages of 30-50. “I decided that I wanted to plan my future and I wanted to know what my future would entail. If I had the gene, this could impact my future and how I live my life.”

Genetic testing is a deeply personal decision on so many levels. Do you want to know if you are carrying the gene that will eventually show itself in the form of a difficult, debilitating and life-threatening rare disorder?

That was where Seth found himself a decade ago. Was it better to know and plan or better to not know and see what happens? There was no middle ground when it came to inheriting the faulty gene. Either you have it or you don’t.

Seth wanted to know.

“We all face our struggles at times, myself included. But we all want to live our best life, right? I’m driven to help people understand how to live their best life.”

Seth Rotberg

“Nobody said to me ‘Hey, Seth, do you want to go through this?’ I wanted to plan my future and I wanted to know what my future would entail,” he said.

Seth got the test and with it, tragic results. He had the gene. What came next turned into a private battle.

“I kept this hidden from my family for three years. I only told a couple of my closest friends,” said Seth, who grew up just outside Boston as a huge Celtics fan. “I didn’t want my mom to find out and feel guilty with all she was going through. I didn’t want to pressure my sister to get tested. Everyone has to make their own decision when it comes to genetic testing and that’s deeply personal. I just chose not to tell them.”

Bearing the weight of knowing he possessed the faulty gene associated with Huntington’s disease, and choosing not to tell his family, Seth was struggling to find his purpose. It took not one, but two, life-altering experiences for him to embrace and understand what he needed to do to begin moving forward.

“I was a senior in college, it was the day before my last semester, and a friend of mine died in an off-campus fire. As I tried to understand why it happened and deal with my grief … let’s just say there wasn’t much closure. He was gone too soon,” Seth said.

“I also had a friend who had the juvenile [form] of Huntington’s disease and she passed away shortly after my other friend, at the age of 26. At that time my thoughts kept coming back to they were both gone too soon.

“Meghan was one with Huntington’s disease. She was sharing her story, living her life and doing all she could to help others,” he said. “That’s when I realized I needed to not only lift this extra weight off my shoulders, but ultimately I wanted to do what I can to help other people.”

Once he unloaded the burden about his future as a rare disease patient, Seth shifted his focus to support of young people like himself. His hope is to be a mentor for young people who face adversity by sharing how taking control of his journey has given him opportunity, fulfillment and hope.

Seth’s passion is driven by his mother’s 17-year battle with the rare genetic disorder known as Huntington’s Disease.

More than just sharing his story, Seth has answered the call to become an advocate to use his own experiences as a way to help alter the landscape and empower others inside the rare disease community.

The challenges that face the Rare Disease Community are bigger than any one individual, team or organization can possibly tackle alone. Seth is part of a community, along with Uplifting Athletes, who are working together to shine a spotlight on rare diseases.

“I’ve learned I can’t always be the strong one,” Seth said. “A lot of my passion came from my mom. Unfortunately there wasn’t more I could do to help her. But from that, what I learned is, I want to help people.”

In June of 2019, Seth co-founded Our Odyssey, a nonprofit organization powered by young adults that serves those between the ages of 18-35 living with a rare disease or chronic condition.

“There’s a purpose to Our Odyssey and what we are doing for others and helping them,” said Seth, an avid runner who also enjoys playing video games. “We are making a difference in people’s lives and that’s a great feeling.”

The vision for Our Odyssey is to establish a national organization with a platform that empowers, educates, and connects young adults experiencing health challenges. The values of Our Odyssey are collaboration, empowerment, belonging, hope, purpose-driven and inclusivity.

Seth started Our Odyssey to help others, while also enhancing his ‘why’ at the same time. The conversations and interaction with others like him have become the biggest influence on his life as the clock ticks toward what he knows is inevitable.

One of the tools Seth promotes as a leader, motivational speaker and community connector is helping others discover their ‘why’ in life. Seth found his through the tragic loss of two close friends, which in turn gave him the clarity to know the burdens he was carrying around were not his to bear alone.

“We all face our struggles at times, myself included. But we all just want to live our best life, right? I’m driven to help people understand how to live their best life,” Seth said.

“Because of what I know, I can’t live in the future. I can prepare for the future and that’s important. But I can’t live my best life knowing what I know is ahead for me. I need to make sure I enjoy the moment, enjoy what I have today instead of being focused too far ahead. It’s not a big mystery, my future. Knowing that has helped me serve others better today.”

3 thoughts on “Carrying the burden of a rare genetic gene drove Seth Rotberg to a life helping others

  1. Seth. So wonderful.
    Think of you every week.
    You are awesome.

  2. Seth, You are amazing! You turned your sorrow into something positive! Your Mom would be so proud of you!

  3. Very inspiring and selfless story. Seth shares values which should be embraced by all, and not just those with rare diseases.

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