ORGANIZATION SPOTLIGHT
OUR ODYSSEY
Our Odyssey was born in June 2019 with a mission to connect OUR ODYSSEY young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving quality of life.
BY SETH ROTBERG
There are over 67 million young adults1 in the US who are between the ages of 19-34. I would say that about 10.2 million2 of these young adults live with a rare or chronic condition (there is no data about this in the rare disease space). These young adults face many different challenges compared to older adults or children impacted by a rare or chronic condition. I am one of those young adults.
At the age of 15, I learned that my mom had a rare, neurological disease known as Huntington's Disease (HD). My family and I believe my mom had this disease five to seven years prior, but was misdiagnosed (like many rare diseases). Five years after finding out about my mom's diagnosis, I decided to go through genetic testing and found out I tested positive for HD. This means that one day, I may end up just like my mom, unless there is an effective treatment or cure. Growing up with a mom who was slowly losing her battle to a rare disease wasn't the easiest thing. In fact, I felt a bit different from my friends because they didn't truly understand what I was going through. During those first couple of years, I had to take on additional responsibility at home, including running errands for my mom and helping her out with household tasks that she was not capable of doing.
Shortly prior to testing positive for the disease, I met my first other young adult who came from a family impacted by HD. I remember meeting her my Sophomore year in college and felt like I knew her for years because she understood everything I was going through without having to explain anything. I finally felt like I could let my guard down and open up to someone else who "simply gets it." It was during this moment that I realized I wanted to connect with other young adults in the HD community who can lean on one another for support when needed.
As I started getting more involved in the HD community, I came across two great groups – HDSA's National Youth Alliance (NYA) and the Huntington's Disease Youth Organization (HDYO). HDSA's NYA falls under the national organization and runs like a chapter, while HDYO is its own international nonprofit solely working with young people impacted by HD. Both of these groups provided some amazing support and resources to me as I was navi gating my own health journey.
ABOUT OUR ODYSSEY:
The mission of Our Odyssey is to connect young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving their quality of life. Our Odyssey's vision is to grow into a nationally recognized organization which will address all of the challenges that young adults with rare and chronic conditions face, to furnish a platform for connection, and supply the resources to enable them to thrive. Our Odyssey's values are collaboration, empowerment, belonging, hope, inclusivity and being purpose-driven.
1. kff.org/other/state-indicator/distribution-by-age 2. cdc.gov/mmwr/preview/mmwrhtml/mm5825a3.htm
GATHER AROUND: (Above) A February in-person Our Odyssey meet-up in Boston was followed by a virtual meet-up in April (left). What we have learned from our virtual meet-ups is how many young adults in the rare and chronic communities are motivated to connect with others in order to discuss relevant topics, including their unmet needs.
In 2018, I had the opportunity to do a TEDx talk ( youtube.com/watch?v=5_O5TfMVqD8&t=) on my genetic testing story. It was during this talk that I discovered the larger rare disease community beyond HD. I started learning more about the rare disease landscape by connecting with others in the community. That is when I met my first young adult outside the HD community, Anna Laurent. When Anna and I hopped on a call, we immediately realized how much we had in common as young adults impacted by a rare disease; coping with a health condition, talking with others about the condition, and the list goes on.
How many more young adults are out there, like Anna and me, who are looking to connect with another young adult who understands what they are going through? I realized two things: 1. HDYO is one of its kind and there aren't many other disease-specific organizations focusing solely on young adults.
2. Although some disease-specific patient advocacy organizations have begun to acknowledge the needs of this demographic, currently there does not exist an organization dedicated to providing yearround services for young adults in the rare disease community. As mentioned at the beginning, there are over 10.2 million young adults living with a rare or chronic condition. Many of them are similar to me, where they are looking to share their journey with their peers in the health space. Even more, they connect with young adults at their local or national conference in their community, but then return to their everyday lives and become disconnected from their peers. After doing more investigating and realizing this unmet need, I decided to create a nonprofit that would provide year-round programming for young adults impacted by a rare or chronic condition. Our Odyssey was born in June 2019 with a mission to connect young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving quality of life. This provides an opportunity for young adults to remain connected and continue the conversations of relevant topics, including the unmet needs among young adults. Prior to the COVID-19 pandemic, we were hosting in-person meet-ups in Boston, Philadelphia, and Washington DC. These meetups are a chance for young adults to meet and network with other young adults who understand what they are going through. The goal is for young adults to leave each meet-up with a sense of belonging to a community. One young adult said "It was so special to connect with extraordinary humans, living their extraordinary lives with extraordinary obstacles. How amazing it is to meet people who just get it. I'm honored to be a part of Our Odyssey's growing family."
Pre-pandemic, we were planning on adding quarterly virtual meetups. However, our planning shifted right away and decided to host weekly virtual meet-ups to keep young adults connected while living with the uncertainty of the pan demic. What we have learned from our virtual meet-ups is how many young adults are in need of connecting with others in the rare and chronic communities. We have been able to cast a larger net and to date have connected with over 300 young adults from over 32 states, 6 different countries, and over 120 different rare and chronic conditions.
Our Odyssey didn't happen overnight and had a lot of great people who supported us from the inception. If you're interested in supporting young adults impacted by a rare or chronic condition, then reach out to us. We are always looking for passionate people who want to make a difference in the community. Join us and become part of the Odyssey journey!•
ABOUT THE AUTHOR:
Seth Rotberg is a community connector, motivational speaker, and cofounder of Our Odyssey who is passionate about bringing his personal experience to better support the health community. He has over 11 years of fundraising, advocacy, and volunteer experience within the health space. His passion is driven by his mother's 17-year battle with the rare, genetic disease known as Huntington's Disease (HD). He has a master's in nonprofit management from DePaul University and currently resides in Cambridge, MA.