In this episode of Causepods we are joined by Jon Strum who is the host of Real Talk MS, a podcast aimed at creating community around the spread of information on multiple sclerosis. Jon’s desire to create this platform grew out of his personal experience giving care to his wife after her own diagnosis and wishing to find a positive outlet through all the difficulty and sadness that is connected to progressive MS. For Jon, the impact and response to his show has been both deeply affirming as well as healing, something that he aims to provide for listeners and guests too.
We chat about why the podcasting format is well suited to this pursuit, especially with the specifics of MS and Jon is kind enough unpacks some of the lessons he has learned as a new podcaster. We also go into two memorable episodes and why they stand out to Jon when looking back. The discussion covers Jon’s approach to communicating meaningfully and honestly when recording and how he facilitates these kinds of difficult conversations. Jon’s story is so inspiring, you are not going to want to miss it, so be sure to listen in!
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[0:00:02.6] MP: Hi, Matthew here. Before we get started, I want to apologize. We did have to take a short break here from producing episodes of the podcast and as you might have noticed, we’ve also had to change our name. We are now Causepods, everything you want to know, you can find at causepods.org. Same great show, same great content, same great mission, just a slightly different name.
Thank you to everybody who has been supporting this effort since the beginning and bear with us as we are definitely going to be ramping up production into 2019. Since we are in the giving season, why don’t you think about heading over to causepods.org and checking out some of the great charity work that’s being done by our hosts. They could certainly use your support. Thanks again for checking out Causepods.
[0:00:02.6] MP: Hi and welcome to Causepods. I’m your host, Mathew Passy. Here at Causepods, we have one simple mission, to highlight the amazing folks who are using podcasts as a way to raise awareness for good causes. Whether it’s a non-profit they work with, a charity they support, a social justice campaign they are championing, a medical condition they are battling or someone who is just looking to make a positive impact on their local community, state, country or the world.
These are podcasters with a positive mission. Along with raising awareness for our guest’s favorite cause, we’re also going to see if we can raise some money to support their efforts. So make sure you check out the show notes for each episode at causepods.org to learn more about what they’re doing and how to help them achieve their goals.
[0:01:26.6] MP: This week on Causepods, we are delighted to take you to the west coast, we’re talking to Jon Strum. He is the host of Real Talk MS. This is a podcast and actually an entire platform that is dedicated news, views, interviews and breakthroughs related to multiple sclerosis.
And so Jon, thank you so much for joining us here on cause pods today.
[0:01:49.3] JS: Hey, it’s great to be with you Matthew.
[0:01:50.7] MP: You can hear me trip as I say Causepods because my mouth wants to default to the other name.
Jon, take us through what was it that led you to want to launch not just the real talk MS podcast but again, this whole platform where you do congressional report cards and you provide other resources like what was it that got you interested in this project?
[0:02:12.4] JS: I guess there were two things that happened. First thing, as a way of background, my wife has been living with a very aggressive case of progressive multiple sclerosis. I’ve served and continued to service our caregiver and so, obviously, I’ve been very interested in what’s happening in the MS research space and multiple sclerosis is a disease for which there is no cure and the progressive form of the disease has very few, even possible medications to mitigate some of the symptoms. It’s an area that needs a lot more exploring.
A couple of years ago, I was very fortunate to be selected as a lay member of the scientific steering committee for an organization called the International Progressive MS Alliance and in a nutshell, all of the major MS societies around the world got together and said, you know, we’re not doing enough to focus resources on trying to better understand progressive multiple sclerosis. Let’s form this global research consortium, for a lack of a better term, that is going to take kind of a unified look using laboratories and researchers around the world. To try to better understand it.
They wanted to make sure that the perspectives off families who were affected by progressive MS were also represented and after quite a long, almost a year long search going through about 300 candidates, they selected three of us to be a part of this. And as I was sitting, in some of the planning meetings and hearing some of the research being discussed. I found myself getting hopeful and that has not always been a condition for people who were affected by progressive MS. There has not been a lot of good news.
I started feeling hopeful and I recognized that I shouldn’t be the only guy in the room feeling that way. I wanted to find a way to share some of what I was hearing to kind of translate the science into plain English and make sure that other people who were being impacted by progressive MS were hearing some off what I was hearing.
I looked for the best way to do that and I thought about a blog and frankly, the problem with that is, an awful lot of people with multiple sclerosis are a little bit challenged in being able to comfortably use either a personal computer or even a mobile phone. I thought, what might be easier for them and obviously, a podcast came to mind.
I was pretty comfortable with technology but I’d never done a podcast before so I gave myself about three months to try to learn how to do a podcast and what it would entail and then I went ahead and launched Real Talk MS. The other impetus behind starting the podcast was that as I became involved in the Progressive MS Alliance, I also became involved here in the US as an MS activist. I wanted to become more involved in activism and raising awareness and letting people with MS know that their voice counts.
I thought, once again, using the podcast as a form of advocacy and to help others become advocates would be a second goal that could easily be achieved at the same time. There were a couple of really important reasons to me to want to start Real Talk MS.
[0:05:42.2] MP: Wow, I want to unpack a couple of those things. You know, you are a caregiver, this is something that you are impacted by personally but you know, because of that you decided that you wanted to make it easier for other people.
You know, what was it that really – I mean, it’s such an altruistic thing to want to do, to want to help everybody else out there, to tell you like, I understand this, I’m going through this, I can break it down, I can unpack it for you. But you know, I assume this is all your funding, you know, nobody is paying you to do this so why take this on, on your own. You know what was it that really said, you know, this is my mission, this is what I have to do.
[0:06:32.3] JS: MS comes in a couple of different flavors. Most people are diagnosed with what’s called relapsing remitting MS which means they get exacerbations, where their symptoms are more pronounced and they also have remissions where they appear to be relatively symptom free for the most part.
Then there’s progressive MS which is not quite so kind. It is a constant progression and amplification of your symptoms. Unfortunately, my wife got dealt that hand and it was a particularly brutal hand at that. When she was first diagnosed, she was an avid cyclist. She used to ride her bike 40 miles every single morning. Within just a couple of short years, she was a quadriplegic. From there, things got worse. In that process, MS took everything from her physically and everything away from us in every other respect.
It’s not a pretty picture, it’s not a movie of the week story that has a happy resolution at the end unfortunately. It impacted us emotionally, financially, every way you could imagine. I guess, on one hand, I would hope, if there was something that I could do to add some insight or provide some information so that other people might not go through the same experience we had that would be worthwhile.
Honestly, for me, it’s a sense of this was a terrible experience and I can either look at it as just a terrible chapter in life, prolonged chapter in life I might add, or, I can find a way to say, well, this was the upside, I was able to do something positive and that was important to me, to try to put something some way, find a way to just create a moment of positive impact amidst a whole lot of destruction and negative impact.
[0:08:32.4] MP: I must ask like, how, I mean, I have to assume that she listens to it but how has your wife responded to you taking on this venture, do you – creating this resource for so many other people.
[0:08:45.2] JS: My wife for the last several years has had to be transferred to what’s called a sub-acute nursing facility. It’s the kind of a facility that’s a step above skilled nursing home and a half a step below a hospital. She requires a significant level of care now. Much more than she could get at home and that was with me staying home. I stopped working for, God, over a decade to be her primary caregiver and at the end, it was me and the live in nurse and our home looking like a clinic and with all that, it was not sufficient to give her the kind of care she needs.
She’s not at home, although I visit her every day. I certainly told her all about the podcast and in fact, she loves to listen to the episodes. Part of doing the podcast has involved me attending conferences in different places. In fact, I just got back from the largest MS research conference in the world. It’s called ECTRIMS and it was held in Berlin, Germany this year. I realize in doing that, it’s going to take me away from seeing her and I’m the only visitor she has.
I check with her beforehand to make sure she’s comfortable with all of that and as supportive as she’s been, and although she has been non-verbal for the last two, three years. We worked out a system where if I break down all my questions into yes-no kinds of questions and I ask her to blink for yes and she does because she understands just fine. I know she’s very supportive, she loves listening to the podcast episodes.
When I’m interviewing someone or I’m talking about a particular subject, if it’s something that has touched us or we have some personal experience with, I try to waive that into it and make sure that her story is a part of it because unfortunately, when most people who know someone with MS probably knows someone with the relapsing remitting form and they may appear to be fairly healthy a lot of the time.
People like my wife aren’t the picture of MS because they’re not around because you don’t see them out and so it’s important to me to kind of waive her story into the things we talk about on the podcast.
[0:11:06.2] MP: Wow. I mean, for so many people, their podcast related, their cause related podcast, you know, has helped them to not only explore a topic and share with others but has sort of served as like a community building piece and a way for them to, I guess vent is one way or you know, just be able to open up like sort of like their own personal support group with a much larger audience than you might have if you actually go to a support group.
You know, to sort of have this experience that you have where you’ve had to create your own unique outlet for it. I mean, it’s just such an incredible thing that you’ve taken on and I’m sure it’s been useful to so many other people who listen but it sounds like it’s been really helpful and really powerful for you as well, is that true?
[0:11:59.6] JS: It is. I think part of what has made it so powerful is the visceral response that I get aside from looking at how many people might be listening how many people might be downloading the podcast to be able to get their emails to get instant messages on Twitter and what have you to hear from people who feel touched by what we’re talking about who feel connected to the rest of the folks, the community that we’re building through the podcast has been incredibly rewarding.
[0:12:32.6] MP: That’s awesome. What about the people that you connect with on the show? The people that you interview. How are you finding them, how do you find that they are in terms of opening up and sharing their expertise but in some cases, I’m sure these very personal and very intimate details of what they’re going through.
[0:12:54.2] JS: Well, again, I was very fortunate to start out as a member of the scientific steering committee for this International Progressive NS Alliance. So I literary had the privilege of attending meetings with some of the most amazing neuroscientists in the world. These are the people who are doing amazing research who are leading the way in the MS research community. And so when I first looked for people to talk to on the podcast, I look to some of them and got nothing but a 100% support. So that’s been great.
And from that, it’s been a great spring board then it became very easy to attract other guests to the podcast because we had an all-star line up there and people were happy to be a part of that. Aside from just the research scientists, I also talked to MS activists, I talked to people who are caregivers, people who are living with MS themselves and these are relationships that I have developed through the podcast.
People who have emailed me and we have developed relationships and so when I’ve said to them, “Hey you have this interesting story, would you be willing to share it?” I’ve never run into someone who wasn’t happy to be a part of it.
[0:14:18.6] MP: That’s incredible. So I imagined that you’ve had some pretty tough conversations in doing this. What is the one episode or the one moment of an episode that really stands out to you as being one of the most impactful for as long as you have been doing this?
[0:14:34.7] JS: You know impact it could be measured in different ways.
[0:14:38.9] MP: I’ll take all the ways you’ve got.
[0:14:41.5] JS: Yeah, I think one way is how helpful a particular episode has been and I’ll have to say there were two that stand out. One, I did an episode on stem cell therapy. Stem cell therapy is tricky when it comes to MS and lots of other chronic illnesses because it is still very much a work in progress and yet unfortunately there are a lot of so called stem cell clinics that exist to basically take money from desperate people looking for a cure.
And so I wanted to shine the spotlight on what the state of stem cell research was today, what looked promising, what the best therapies might prove to be and where we were in that research. And also, shine a spotlight on some of these shady operators who are offering solutions that will lead to no outcome except someone will be many thousands of dollars poorer for the effort. That was extremely well received.
So I was happy to see that not only did it get just great feedback and great pickup but afterwards, the MS Society of the UK contacted me because some of the people in their research area listened to the podcast and they said, “Hey, we heard this and we’re planning to do a special week all about stem cell therapy. We can’t explain it any better than you have and we’d love to be able to use that episode as part of what we are doing.”
So it reached so many people and that was really, really gratifying. I think the other one that really stands out to me was the one I did on MS and depression. About 50% of the people who are diagnosed with multiple sclerosis end up developing clinical depression and yet it often gets overlooked. It often goes untreated and when you are dealing with depression, it makes everything else worse. It makes your symptoms worse, it makes your world view, your perspective in life less.
So I was really happy to be able to talk with an incredible psychologist, Dr. Amy Sullivan from the Cleveland Clinic, which was one of the leading medical facilities in the world and certainly one of the leaders in MS research and treatment and we talked about depression and I have to say that has been the number one most downloaded episode that I’ve ever done. So those two were particularly impactful to my audience and that made them impactful to me.
[0:17:24.5] MP: That’s incredible and it sounds like you have a great relationship with your audience that they communicated with you, that they engaged with nicely. Any secrets to creating that kind of engagement or do you think a lot of it has been lock and timing?
[0:17:44.0] JS: You know I think that people who are affected by MS whether they are patients themselves, whether they are caregivers, other family members, we belong to a club that no one ever asked to join and I think just in conversation in what you hear one person sane, you recognize that they get it. It’s like knowing the secret handshake and I think that happens a lot on the podcast.
I think when I hear from people and when they hear from me every week there is an authenticity to it that can’t be faked and so I think that has an awful lot to do with creating a bond with my audience in the relatively short period of time.
[0:18:31.3] MP: All right, so again you never had a podcast before this. You have gone on to create not only a really useful and great podcast with the community but as you said, you have created a lot of resources, you have created a lot of connections, you have created a lot of relationships as a result. What did you learn along the way specifically about a podcast that you thought was either going to be insurmountable or scary but then you were able to just get over it and do it? What would be your advice to someone looking at this and thinking like, “Well that’s a lot of work?”
[0:19:10.1] JS: I think that there is a lot of things that you can focus on when you are creating a podcast. Audience growth, marketing, they are really important and yet my experience has shown me that if we focus on the content first, it’s not that the other things will take care of themselves but some of that work will already get done because of your content, you can experience great word of mouth within the niche that you are trying to reach.
So I think understanding who your audience is and creating content that is going to benefit them are the biggest two things you could do to develop a podcast it’s going to have some sustainability.
[0:19:58.7] MP: So maybe we’ve covered this or maybe we didn’t cover it clear enough that you mentioned earlier that for some of the folks who might be listening, computers and screens and typing like a lot of that stuff might be a little bit difficult for them to coordinate and to work with and so obviously the podcast was just a natural medium because it is an effective way to get the message out.
What else have you learned about the power of podcasting specifically as far as a way to get the message out there, as far as a way to communicate with your audience of those who are dealing with an MS diagnosis as well as the caregivers and others around it who are working to support the community?
[0:20:40.1] JS: Well I think doing the podcast has kind of validated my hope that podcasts are an incredibly effective tool for reaching an audience in my case, a very niche audience but reaching them in a way that gives them an opportunity to interact. That gives them an opportunity to talk back. Sometimes it’s in writing and sometimes they talk but to be able to talk back to connect, I think podcasts great for creating a sense of connection.
And I think they can do things that the written word can’t, you know? People can hear emotion in someone’s voice. They can hear what you are passionate about, they can hear what you are about and they can hear what matters and all of those things I think are really critical parts of the message you want to put out as content creators. So for me I found podcasting to be a really outstanding global platform for reaching a community and building a community from your audience.
[0:21:48.0] MP: So given what you have created, given the success that you’ve had, you know somebody else that is hearing this who is thinking about launching their own podcast for a cause, what advice would you give them as far as getting started beyond what you said about creating good content but what were the big hurdles that you overcame or what was one of the places that you got tripped up early on that maybe you can help somebody avoid that pitfall getting started on their own?
[0:22:16.5] JS: Well I think you want to understand where your audience is today, where do they go online and how can you get your message in front of them. I was really, really fortunate that I put an email out to the people that I knew in the MS community when I was launching my podcast. I actually sent that email about three weeks before I launched to give them a heads up and to basically ask for their support and when you come to the Real Talk MS website, one of the things you can do is you can sign up to get email updates.
The very first person who signed up was the CEO of the National MS Society and that was the most affirming message I needed to receive because I knew then the largest MS organization in the US and the largest private funder of MS research in the world was going to be a supporter and they were going to be helpful and they’ve been great in all of those areas. So I think understanding where your audience is going now for information and finding ways to create the partnerships and the alliances.
That will allow your message to get in front of these people can save you a lot of leg work in terms of developing your audience.
[0:23:45.4] MP: And I assume he is still a loyal subscriber and listener to the show and a big supporter of what you’re doing and so I think it is a good time to let everyone know that as part of Jon being so gracious of his time and coming on Causepods to talk about the Real Talk MS Show and his efforts out there, we are going to start a Go Fund Me page in Jon’s honor with all proceeds going directly to the National MS Society.
We don’t take a cut, there is nothing that we get out of it. This is all for the National MS Society on Jon’s behalf and so I hope that the Causepod community, the greater community will hear this and realize what an incredible thing it is that you are doing and an incredible cause that you are working towards and working with and hopefully there is just more that could be done to support those who are impacted by this, both the patients themselves as well as like you said, the caregivers. The friends, the family, the people around them.
And so Jon I just want to salute you for what it is that you are doing and congratulate you on the show because it is a really, really great, world-class operation. It is a great thing that you are doing, wishing you the best of luck and I just want to thank you again for joining us here on Causepods.
[END OF INTERVIEW]
[0:25:03.8] MP: Thanks for listening to this episode of Causepods. Again, if you’ve been inspired by the work of our guest, please check out the show notes in your podcast app or causepods.org. There you will find links to their work and a special donation link set up to support their favorite efforts.
From there, you can also follow and subscribe to the show on Apple Podcast, Google Podcast or wherever you enjoy your podcast and remember, if you have a Causepod and want to join me for an interview, please check out Causepods.org and fill out the interview request form. If approved, we’ll schedule you for a chat and share the amazing work that you are doing with the Causepods audience.
Thanks again and see you next time on Causepods.