Thankfully, the world is getting “woke” to the notion that people with chronic conditions like diabetes need connections and peer support.
Today we’re happy to introduce a new organization aimed at just that, targeting young adults ages 18 to 35, called Our Odyssey. It was launched in June 2019 in part by co-founder Kristina (Wolfe) Figueroa from North Carolina, who lives with type 1 diabetes. We were excited to meet her in early June at our own DiabetesMine D-Data ExChange technology leaders forum in San Francisco.
We talked with Kristina recently about her own story, and the vision and mission of Our Odyssey…
DM) You’ve lived with type 1 diabetes for many years, right?
KWF) Yes. I was diagnosed on May 6, 1995. I had just turned 6 years old. I look back — with diagnosis hospitalization now averaging 1-2 days — and remember being in the hospital on an IV for a week and a half. It’s funny to think back and realize that my parents had a VHS Camcorder the size of a briefcase… they used it to film me practicing giving shots of saline to both a lemon (that some of you may be familiar with) and myself. During one of these “filming sessions,” I remember so vividly that I looked my mom and dad in the eyes and said, ‘I’m going to make a difference for young people with diseases one day.’
Now, 24 years later, I’ve found my voice in the healthcare space and am working very hard to empower others to find theirs. I think that’s something that MANY of the T1D advocates I know do very well… and I think it’s partly because this diagnosis and daily maintenance is tiring. We know we need others. We also know we don’t ever want others to feel alone like we have felt.
Tell us about your career in clinical research and public health…
What started as determination to become a doctor who would cure type 1 diabetes quickly morphed into an interest foundational to developing cures, new treatments and making them affordable and accessible to people living with ALL diseases. After studying population health and epidemiology in grad school (making the choice to drop out of clinical training), and launching my career in clinical research, I rapidly learned about the complexities of developing new treatments and devices, and the diplomacy required to get them commercially approved for patient consumption.
The politics of this approval, the pricing trends and the inflation of healthcare costs under the Affordable Care Act (ACA) drove my increased interest in Health Policy and Economics, specifically as it relates to health behavior patterns. The reason, I believe… is I have always associated my personal health decisions with these things. In the process, I’ve uncovered many psychosocial, emotional and mental health issues that have arisen (and that I’ve historically denied) because of living with type 1 diabetes.
Where are you working on now as far as research?
I currently work for a Sydney-based Contract Research Organization (CRO) called George Clinical, and am also pursuing research in my Doctor of Public Health program at the Brody School of Medicine at East Carolina University. My experience in the business of clinical research and my own academic research has allowed me to learn, rapidly, about the timelines and regulations of developing new treatments, along with the implications of our existing healthcare systems and the unmet needs that exist.
Social and emotional support for young adults/professionals impacted by rare and chronic conditions (like type 1 diabetes) is an unmet need in the current state of affairs.
Is that what led to the start of Our Odyssey?
Yes, it was a combination of my own self-realized health behaviors, the relationships I’ve developed with other patient advocates with other prognoses and the things I’ve learned in my research and career have come together to help me connect with my co-founder, Seth Rotberg, who’s a patient advocate living with Huntington’s Disease. Together, with a little grit and many discussions with advisors, we decided this is something that is needed and that #WeAreNotWaiting (see what I did there?!).
Seth and I began our conversations about this in January 2019, after I completed a manuscript on the topic for my doctoral program. In June, we launched the organization. While our strategy continues to develop, the interest is great and the demand for our services is growing rapidly across the nation!
What exactly are the services that Our Odyssey offers?
Our primary services in this phase of our growth are centered around in-person meet-ups for young adults impacted by a rare or chronic condition. Through these, we aim to facilitate organic relationships and heighten a sense of belonging, also increasing our opportunities to develop peer-support programs for managing symptoms, mental health and beyond.
We have hosted one already in Philadelphia and are planning others in NYC, Boston, DC and Raleigh, NC, for the remainder of the year. Once we establish a meet-up model that works, our vision is to expand into other regions in the Midwest and West Coast.
To date (about one month after launch), we’ve been able to reach over 500 individuals socially, and have connected with over 150 individuals for phone calls and in-person meeting follow-ups.
From there, we will establish educational toolkits and resources, including skilled professionals, to help young adults address a variety of different issues that impact this generation: how to handle relationship discussions, planning for career and family, health insurance guidance, life insurance planning, financial planning, and more.
Why did you pick the young adult age range to focus on?
Research has shown that the age range most impacted is 18-35 years old. For this reason, we welcome anyone in this age group (and their caregivers) to be a part of our mission.
You were at the recent 2019 ADA Scientific Sessions talking about your new org. Anything to share from that conference?
From my personal perspective, this year was one of the most exciting times to be a part of ADA! I was far more interested in the research this year, as there were a lot of sessions and break-outs on the psychosocial impacts of living with diabetes. Additionally, the public health and policy focus was more front and center this year for me, than years prior. I think a part of this is because ADA is recognizing the need to shift and address the innovation and collaboration needed to address all of our many issues on foundational levels.
My favorite part, I have to admit, was the DiabetesMine #DData event on June 7! This day, above all others, always has deeper connections. It wasn’t as “sciency” (though I consider myself a #nerdalert !) as the research sessions at ADA, and offered the intimate, relational setting that science oftentimes misses.
What else would you like the D-Community to know about your new peer support org?
Our Odyssey would love the opportunity to work closely with ADA, JDRF, Beyond Type 1 and some of the other communities and orgs… to offer our services in connecting young adults impacted with T1D an opportunity to connect with other young adults in similar situations.
Thanks, Kristina! We look forward to seeing what comes next for Our Odyssey.