MS advocate, RealTalk MS creator & host
Welcome to “7 Questions with A Couple,” a monthly series that includes quick conversations with a variety of experts and influencers from throughout the MS community. We are so humbled and honored – as March officially is MS Awareness Month – to share our conversation with Jon Strum. If you are living with MS or are involved with the MS community, Jon likely needs no introduction. If you aren’t familiar with him, he is a powerful advocate and voice (literally check out any of his excellent, informative RealTalk MS podcasts) for the nearly 2.8 million people throughout the world living with the disease.
1. It takes a lot of effort to create, host and produce a podcast. What led you to finally say, yes, this is what I want to do?
In 2016, I began a 6-year term as a member of the International Progressive MS Alliance Scientific Steering Committee. In this role, I met some of the best and brightest minds in the world; research scientists, clinicians, experts from the pharmaceutical industry, and others, committed to moving the work forward in solving the complex riddle of progressive MS. As I learned about some of the research being done, I found myself returning home from Alliance meetings feeling hopeful about the future. And I thought that other families affected by MS might feel a bit more encouraged about their future if they knew more about some of the amazing research taking place in laboratories all around the world.
I realized that some of the science could be pretty complex, so part of my job had to include translating that science into easy-to-understand English. That’s when I first thought about doing a podcast. I liked the idea of a podcast because it seemed easily accessible. A podcast is portable. People could listen at home, but they could also take the podcast with them to the gym, they could listen when they took their daily walk, or even when they were commuting to and from work. Now, at that point, I had no idea of how to put a podcast together, so I gave myself 90 days to learn podcasting. Then, in September 2017, RealTalk MS launched.
2. Who is on your short list of people you want to interview for RealTalk MS but haven’t had the opportunity to connect with yet?
Every episode of RealTalk MS includes an interview with people I call “difference-makers.” I interview scientists, clinicians, rehabilitation specialists, people who have found novel ways of raising money to support MS research, and people affected by MS who have found ways to inspire the rest of us…like the two of you! Having completed over 200 of those interviews, I’m happy to say that no one has ever turned down an interview request. So, I will keep fingers crossed that my luck continues to hold out!
3. RealTalk MS now is partnered with the National Multiple Sclerosis Society, and you also host and produce the organization’s weekly Ask an MS Expert webinar. When you were contemplating whether or not to launch a podcast, did you ever envision it would lead you to this point?
Never in my most wildly optimistic moments did I have a clue that RealTalk MS would connect with so many people or lead to other opportunities. In 2019, we announced a partnership between the National MS Society and RealTalk MS. The MS Society’s support has extended the reach of the podcast so that today, about 10,000 people living in over 100 countries listen to every weekly episode of RealTalk MS. I consider it an honor and privilege to continue having what I always hope is an interesting and engaging conversation with so many members of the RealTalk MS listener community.
The weekly “Ask an MS Expert” webinar debuted on March 20, 2020, because the National MS Society wanted to provide timely information about the impact of COVID-19 on people living with MS. It’s a great example of how the MS Society pivoted quickly and found a new way to share important information with the MS community. And the MS community responded. Since its launch, we’ve expanded the topics that we cover each week on “Ask an MS Expert.” The webinar was recognized at last year’s Consortium of MS Centers annual meeting, winning an award as the “Best Educational Program” and past episodes of the webinar have been viewed more than one million times. I should also point out that while I host “Ask an MS Expert,” it’s produced by an exceptionally talented team who work behind the scenes to make that show as good, as topical, and as informative as it is.
4. As an MS activist, you are a NMSS District Activist Leader and chair of its California Government Relations Advisory Committee. What keeps you motivated when our country seems so politically divided, and what words of encouragement would you have for someone who is considering getting involved as an activist?
It’s probably the old Political Science major in me, but I truly believe that the things that people affected by MS want the most – things like access to quality healthcare, affordable prescription medications, and funding for MS research are, to a very large extent, all functions of public policy. The people who decide whether we get those things are our elected officials at both the state and federal level. So, to me, advocacy is a priority. And advocacy is empowering. I would tell anyone considering getting involved as an MS activist that advocating on behalf of your own interests is one of the most empowering things that a person can do for themselves.
5. You also are a member of the iConquer MS patient-powered research network, where you lead a team of researchers, caregivers and healthcare providers in defining and piloting a protocol to provide proactive support and resources for care partners whose family member has received an MS diagnosis. Why is this work so important to you?
The progressive and long-term nature of MS means that MS care partners take on a responsibility that can increase over time and last for decades. Research has shown that this contribution comes at an unacceptably high cost, as care partners themselves face a significantly increased risk of reduced health and well-being. Long-term family care partners have been shown to face a more limited lifetime earning potential and even a shortened life expectancy. We know that care partner burnout is real, and its consequences can be chilling. Supporting MS care partners not only improves their own quality of life but leads to a better quality of life for the people they provide care for. It’s about achieving better outcomes for everyone.
And research can only happen when we choose to get off the sidelines and participate. I think iConquer MS is exactly what patient-focused (and care partner-focused!) research should be. As part of the iConquer MS people-powered research network, we not only have the opportunity to participate in research, but we can interact with other researchers and even suggest research topics. That’s exactly how the Care Partner Protocol project got its start.
6. OK, so we talked a lot about everything you’re doing for people in the MS community. What do you do for self-care and to just enjoy your free time?
You might be surprised to learn that I’ve been performing magic since I was a kid. My particular interest is in close-up sleight of hand magic and I’m an active member of the famous Magic Castle, a private club for magicians in Hollywood. I also enjoy cooking and mixology. I’ve even taught classes in creating craft cocktails.
7. You truly have your finger on the pulse of Multiple Sclerosis research and the impact the disease can have on families. What words of encouragement would you give to someone who just learned that MS will be a part of their life?
As innovation in technology continues to accelerate the rate of scientific discovery, we’re seeing important and meaningful advances in MS research being made in real time. Scientists are close to identifying biomarkers that can predict MS before symptoms develop. Clinical trials are underway evaluating methods of eradicating the Epstein-Barr Virus, which has very recently been shown to trigger most MS. And clinical trials on a whole new category of high-efficacy disease-modifying therapies are producing encouraging results. These are the kinds of breakthrough discoveries that will provide us with ways to stop MS progression, reverse the damage that MS has done, and end MS forever. We’re not there today, but we’re closer than we’ve ever been.