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Jul. 31, 2020

TOPIC: Featured News, Patients & Members, Head of the Herd

Head of the Herd: Seth Rotberg, Co-founder, Our Odyssey

Posted by Valaree DonFrancesco

At the head of the herd is… Seth Rotberg, Co-Founder, Our Odyssey

Seth most frequently checks his… Twitter or Instagram accounts

Seth advocates for… Young adults between the ages of 18 – 35 living with a rare disease or chronic condition

Seth is located in… Boston, Massachusetts

How Seth got here… When I was 15 my mom was officially diagnosed with Huntington’s disease, and for the first few years when my family was dealing with that diagnosis, I didn’t really know how to cope with it. I had support from my friends, but they didn’t really get it. Things kind of changed for me when I realized I was at risk and started thinking about testing. I wanted to get more involved.

I ended up going through genetic testing and testing positive for Huntington’s at twenty, and I used those results as motivation. It started small with running my own fundraising events and grew into doing advocacy work and sharing my story locally to now starting an organization.

Huntington’s is really tough mentally because I have a rare, chronic condition that I don’t have symptoms for yet, but I’m still guaranteed to get. I have to think about things that other people my age don’t have to think about. If I trip or forget something, I’m thinking “is this just me being a regular person who just trips or forgets things, or is this the beginning of symptoms?” Meeting other young adults in the Huntington’s disease space was huge for me because I didn’t have to explain myself, they just got it. I wanted to bring that sense of belonging to other young adults living with rare or chronic conditions. I want them to feel like they have a place where they can put their guard down and aren’t being judged and can just talk about their condition and life with other people who just get it.

What Our Odyssey is hoping to accomplish in 2020… Connecting with people, especially at a time like this, is so important. We’re hoping to continue to provide that support and a place for young adults to connect through the virtual meet-ups we’ve been hosting. We’ve also been adding topic-specific meet-ups which we’re really excited about.

How Our Odyssey has adjusted to the new normal under COVID-19… We’d originally had some in-person meet-ups planned, but we’ve obviously switched everything over to virtual. We were originally just doing virtual meet-ups quarterly but now we’re doing them weekly because the demand is really there.

In the next five years, Seth plans to… Elevate Our Odyssey as a resource to empower and connect young adults. We want to make sure young adults have their voice at the table, so helping young adults find those opportunities to raise awareness and effect change in their community and preparing them to do that is one of our goals.

We’re also hoping to build out some resources for young adults made by young adults so that if someone comes to Our Odyssey looking for information on the transition to college, for example, we can point them to an article that another young adult wrote or a webinar or something. There’s a huge need for resources that are really geared toward the young adult population.

Tips for running your organization… Be transparent and communicate effectively. Prepare ahead of time and be ready to be flexible. Don’t reinvent the wheel. If another organization is already doing something, don’t feel like you need to do the same thing. Don’t feel the need to compete with others. Instead, talk to other nonprofit leaders and find ways to collaborate and work together that can make it easier on both ends.

How Seth remains hopeful… I try to reframe my negative thoughts as much as I can. Instead of looking back at an event and thinking “oh, I could’ve done more,” I try to think of what I learned from the experience and how I can incorporate those lessons into future plans.

How Our Odyssey has used NORD services… I had the opportunity to speak on a webinar recently about starting a nonprofit and also at the Living Rare Living Stronger Forum, which is a great platform to get the word out about Our Odyssey. NORD has also been really great in helping us promote our meet-ups on Twitter so we can reach more young adults.

Where Seth learned to be a leader… My parents, in all honesty; how they raised me and the examples they set. I also had some great advisors and mentors in college who guided me and brought me under their wings to get me to where I am today.   

Advice for other leaders during this time… With everything going virtual, a lot of folks are considering which platform to use for virtual conferences and such. My advice would be to do your research and look at your options because which one is best to use can really depend on what your needs are.  

Seth’s words to live by… “Live as if you were to die tomorrow, learn as if you were to live forever.” -Ghandi

If Seth found a cure and Our Odyssey had to find a new mission… I’m not sure our mission would change all that much. We would still want to help improve the lives of young adults because, with or without a rare disease or chronic condition, young adulthood can be a pretty tumultuous period.

What Seth does to unwind… I enjoy running. I do play video games. I also like sports and comedy – I’m a huge fan of John Oliver and Trevor Noah.