Resource Update
The Resource Update section is authored by Jon Strum, the host of the RealTalk MS podcast that is accessible globally to anyone with internet connection. Below, Jon tells the story of how the podcast came to be.
SOME REAL TALK ABOUT REALTALK MS
When I first applied to become a member of the Progressive MS Alliance Scientific Steering Committee, I saw my participation as a two-way conduit. I saw myself in a position to share the perspective of families affected by progressive MS, and I also saw myself communicating the information being discussed in our committee back to the greater community of people affected by MS.
The more that I thought about it, the more it became clear that the opportunity to communicate relevant news to people affected by MS was even bigger than I had originally envisioned. While science was making real strides in better understanding multiple sclerosis, and there were new treatments on the horizon, and new approaches to rehabilitation being tested, the news wasn’t getting out to everyone who needed to hear it. Families who were affected by multiple sclerosis – both progressive MS and relapsing-remitting MS – were missing out. Part of the problem was that people not involved in medical research didn’t have easy access to this kind of information. And part of the problem was that even when information about clinical trials and drug development was made available, it could be difficult for a non-scientist to understand. The question I was facing was how, exactly, was I going to change that?
My first thought was to write a blog. But I quickly realized that it can sometimes be challenging for someone with MS to operate a personal computer. They might have difficulty using the keyboard or mouse. Or they might have vision issues, which would make reading a screen full of text a difficult chore. My next thought was to start a podcast. It seemed to be the most easily accessible medium, offering the fewest obstacles to an end-user who might be living with a disability.
Unfortunately, besides listening to a few podcasts, I didn’t know the first thing about what it might take to produce one. So I gave myself three months to learn how to produce and distribute a podcast, and then my podcast was going to be launched.
It only took a few minutes to come up with a name for the podcast. After all, I was creating a podcast that would break down some of the scientific jargon as I, hopefully, explained in plain English some of the amazing MS research that was being done. As a strong believer in the power of advocacy, I also wanted to use the podcast to motivate my listeners to advocate on their own behalf. And I wondered if the podcast could even better connect research scientists with the people they were dedicated to helping. My podcast was going to be “real talk” about MS, so what better name than RealTalk MS?
With the name of the podcast decided upon, I spent three months learning the technical side of podcasting – microphones, boom arms, pop filters, digital recorders, audio post-production, RSS feeds, media hosting, and more. I learned the necessary steps that I would have to take to make sure that RealTalk MS would be available on Apple Podcasts, Google Podcasts, and all of the major podcast apps. It felt as though those three months went by in the blink of an eye. And then it was time to launch.
Episode 1 of RealTalk MS launched on September 22, 2017. I used the first episode to explain what the podcast was going to be about, and why I thought it was important. I told my listeners that we’d be talking about newly published clinical trial results, potential changes in healthcare legislation, newly approved MS treatments, and other news that would directly affect them. I said that they would hear from world-class researchers, MS activists, and MS warriors, all of whom were dedicated to making a difference in the lives of families affected by multiple sclerosis. On Episode 2, I introduced my first guest, Donna Edwards, a former member of the U.S. House of Representatives who had voted in favor of passing the Affordable Care Act into law, and then found that she needed the protections of the Affordable Care Act after leaving Congress and being diagnosed with MS. Ms. Edwards embodied all the best attributes of an MS Activist.
Today, more than 100 episodes later, I can report that the RealTalk MS mission hasn’t changed. Each week, I talk about recently published clinical trial results, emerging rehabilitation strategies, the latest wrinkles in healthcare legislation, and the amazing work being done by researchers and clinicians who are dedicated to improving the lives of people affected by MS. I make sure to include an interview with a difference-maker in every episode of RealTalk MS, so that I can introduce my listener community to remarkable research scientists, rehabilitation specialists, MS activists, and amazing MS warriors.
