The Origin of Our Odyssey: Support for Rare Young Adults

Kristina Wolfe and Seth Rotberg first crossed paths on LinkedIn, recognizing one another as fellow patients. Kristina is passionate about public heath, health economics, and the way non-holistic approaches to health are impacting patient costs, specifically for patients aged 18-34. Seth’s background is in nonprofit organizations, and increasing awareness, funds, and community for those with Huntington’s disease.

Both young adults with rare and chronic conditions, Seth and Kristina hold insight into the challenges young adult patients face; this includes not just access to medications and affordability of their healthcare, but also social pressures and body image concerns.

As Seth and Kristina talked over the phone for the first time, they realized more and more how much they related to one another, and how they also had a strong desire to make a difference. They had an idea to create something, to provide consistent support to other young adults with rare and chronic conditions. They immediately began to plan. They conducted a survey to gauge interest and learned there was a need for emotional and social support that was non-judgmental and allowed for vulnerability.

They decided to bring people together to combat the alienating nature of chronic illness. Together, with other young adult advocates like Anna Laurent and Morgan Manella, they launched a new organization for young adults, Our Odyssey. While still just beginning to cement its long term plans and raise funding, Our Odyssey has already facilitated multiple in-person meet ups for young adults.

 “Our goal is for everyone to have support no matter where they are and what part of their journey they are in. We are planning to incorporate a mentoring and coaching aspect, with discussions around financial, career, and family planning. How to talk about your condition, when and how much to disclose, how not to feel defined by your condition and how to cope with comparisons to others and survivor’s guilt.”

Seth and Kristina intend to pave the way for open and honest conversations. Mental health will be addressed as well, although formal counselling will not be provided through Our Odyssey.

Seth hopes that there will be lines of communication with other organizations as well, pointing out that some disease specific organizations may not have a very active young person community or annual conferences, and individuals can be referred to Our Odyssey, Likewise, Our Odyssey can refer patients to condition specific organizations should they not be aware of those resources.

 

 “We are not trying to compete with anyone – we aim to work with them and to empower young adults by providing another resource.”– Seth

Our Odyssey currently plans to provide in-person and virtual meet ups with the hope to expand even more over the next few years. In the meantime, they are wasting no time empowering young adults, tackling difficult topics, and breaking stigmas.

“We have a big vision for this, and are making sure we are able to measure success and outcomes, and ensure that we make it the best it can be.”

Learn more about Our Odyssey here.


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