When Jon Strum began his “RealTalk MS” podcast two years ago, he did not imagine he soon would have thousands of regular listeners in more than 60 countries. Now, Strum’s popular online audio series has a new partner: the National Multiple Sclerosis Society (NMSS).
Strum uses his weekly half-hour platform to cut through jargon and deliver the latest news about multiple sclerosis (MS) research, advocacy, clinical trials, treatments, healthcare legislation, and other information that is of interest to the roughly 2.3 million individuals globally who have been diagnosed with the neurodegenerative disorder — including nearly 1 million adults in the United States — and their support teams.
The episodes feature conversations with leading investigators, clinicians, advocates, caregivers, policymakers, patients and other community “heroes,” as Strum calls them.
“This is a great fit for us,” Ron Zwerin, executive vice president of marketing and brand at NMSS, said in a press release.
“The Society and ‘RealTalk MS’ share common goals; we inform people affected by MS, enable them to live their best lives, and we educate and engage influencers across a wide spectrum that includes policymakers, providers and fundraisers,” Zwerin said.
While Strum will continue to make editorial decisions for the podcast, the Society will work collaboratively on topics and cross-promotional content. He knows the organization well, having worked with it in some fashion for about 20 years. The Society describes itself as a “movement” of patients, healthcare providers, volunteers, donors, fundraisers, advocates, and community leaders in the fight against MS.
“I have a close relationship with the Society,” Strum said in a phone interview with Multiple Sclerosis News Today from his home in Southern California. “I think they saw that I could add a slightly different voice to subjects that people who look to the Society are interested in. It’s wonderful.”
According to Strum, the podcast grew from love, a desire to help others, and happenstance.
The story began in 1997 when Strum’s wife Jeanne — at the time an avid cyclist who would rise daily at 4 a.m. to ride her bike 40 miles — was diagnosed with secondary progressive MS, a disease form that usually develops from relapsing-remitting MS and worsens progressively.
That was the case with Jeanne. In just a few years she became a quadriplegic. That was followed by vision and memory problems, and loss of the ability to swallow or speak. Confined to bed, Jeanne has lived for more than a decade in a subacute nursing facility. She’s been hospitalized since July.
Jon Strum was born in New Jersey, grew up in Ohio, and moved to Los Angeles after graduating from Case Western Reserve University with a communications degree. He worked some in digital marketing, but his devotion was to Jeanne and her round-the-clock needs.
His family upended by MS, Strum wanted to do more. He began looking for ways to battle the disease and perhaps make others’ disease journeys a little less traumatic. One of the first things he did was volunteer to write the NMSS’s first blog for MS caregivers. Then, through a local chapter, he facilitated a caregiver support group, and provided one-on-one coaching.
In 2015, a friend from the Southern California NMSS chapter told him the International Progressive MS Alliance — a global collaboration of MS organizations, researchers, clinicians, pharmaceutical companies, and progressive MS patients — was looking for lay applicants for its scientific steering committee, and that he should apply. From hundreds of applicants worldwide, Strum and two others were chosen. The idea for the podcast began to take shape.
“In 2016 I went to a couple of meetings and found myself really encouraged and hopeful about the future of progressive MS,” said Strum. “Then it occurred to me that a lot of people might feel hopeful if they heard what I did. I thought about what would be the best way to share. I thought about a blog, but I knew firsthand that some people with MS might have trouble negotiating one, whether looking at a screen or using a mouse. Then I thought maybe a podcast would work. I gave myself 80 days to learn about it. RealTalk MS launched in September 2017.”
Since that first podcast, it has been a full-time operation, with Strum doing all the research, interview scheduling, and whatever else is needed. It is hard, all-encompassing work, but he relishes it. Strum said he learns a lot from his listeners, who also frequently suggest podcast topics.
In his most recent episode, he talks with a caregiver strategist and a MS rehabilitation researcher, and discusses an investigational immune system-based therapy, as well as what a Montreal, Canada, research team is doing to halt MS progression.
“Topics run the gamut, from cannabis-based treatments to stem cell therapy,” he said. “We talk about global issues, too, like when Sativex was approved in the United Kingdom. I try to fill in the blanks with information that, as a medical consumer, I’d like to know.”
In addition to disseminating information, what is just as important to Strum is using his platform for advocacy, he said. For example, in the run-up to the 2018 U.S. congressional election, he added to the podcast’s website an interactive function that provided “report cards” of candidates based on their votes on MS issues.
“It’s a passion project for me,” he said of RealTalk MS, adding that of the more than 750,000 existing podcasts globally, his is in the top 10%, in terms of listeners. “And people reach back to me with emails and direct messages. That’s what’s most gratifying. It’s once a week over the Internet, but every day in terms of all forms of communication.”