VF Young Adults Group Spearheads New Vasculitis Visionaries Podcast Series

As 2020 kicks into full gear, our VF Young Adults community has continued growing and coming up with new ways to build upon a successful 2019. Last November, we were fortunate enough to be honored in Kansas City for our efforts to raise awareness about vasculitis through a video featuring about a dozen young adults.

One of the young adults who starred in the video, Kaley Beins, joined me and several others in Kansas City to accept the award. While we pampered ourselves with Z-Man sandwiches from Oklahoma Joe’s BBQ (which officially stole Kaley’s BBQ-deprived heart, by the way), we also started brainstorming about potential new ventures that could take our mission of education and patient advocacy to greater heights.

With the help of VF Executive Director Joyce Kullman, we came up with a solution that we’re incredibly excited to roll out over the next few months—the Vasculitis Visionaries Podcasts. Our vision with this new podcast series is to better connect patients and physicians, while also providing further insight into some of the recent medical developments we’ve seen and their impact on different types of vasculitis.

If you’ve been to a VF International Symposium in the past and listened to any number of the doctor-led educational talks, you know how fortunate we, as a vasculitis community, are to have so many talented physicians who have a genuine passion for constantly learning more about the intricacies of such a rare disease.

Of course, our VF symposia only take place every other year, while just about all of our physicians are routinely working to better the lives of patients by launching new projects and research year-round. Our thinking is that this new podcast will allow us to speak one-on-one with many of these physicians to bring listeners the latest developments in their work, which in turn will allow patients and caregivers to stay informed.

This project also lets us further promote the concept of patient advocacy, as Kaley and I are both co-hosts of the podcast, and also fellow patients who have the desire to learn more in our own fights against the disease. (I was diagnosed with eosinophilic granulomatosis with polyangiitis [EGPA] in 2014, while Kaley got her granulomatosis with polyangiitis [GPA] diagnosis in 2015.)

I think Kaley is an especially great figure for listeners to look up to—she’s someone who has taken her passion for advocacy to the next level, as she is now a public health practitioner studying chemical exposures and disease development in the Washington, DC, area. She even wrote her master’s thesis on vasculitis! Our hope for this podcast is that our listeners come away from each episode feeling entertained, informed, and empowered to continue pushing forward through their respective involvement with vasculitis, whether as doctors, patients, or caregivers. With the guest list of physicians we have lined up, and working with a talented co-host like Kaley, I’m confident we’ll meet that overarching goal. Thanks in advance for listening!

To hear the podcasts, visit:

VF Newsletter contributor Ben Wilson is a sports broadcaster currently based in Las Vegas, Nevada, and a VF Young Adult Group Leader.