Why Real Talk MS is THE real deal in MS podcasts

The massive amounts of Multiple Sclerosis information online can easily overwhelm anybody looking for the latest MS news.

Each day, there are TONS of new MS data, facts and resources reported—everything from cutting-edge clinical trials to research trends, treatment options, advocacy opportunities, inspirational stories and more.

So much important stuff, and we count our blessings for discovering a trusted resource that keeps us up-to-date and inspired because it is committed to keeping everything, well, real. 

Real Talk MS is an insightful and engaging weekly podcast that highlights some of the top trending MS stories and features thought-provoking interviews with current MS newsmakers.

This all is thanks to MS activist and visionary Jon Strum, who created and hosts this prodcast that premiered Sept. 22, 2017, and already is among the top 20 percent of all iTunes podcasts.

Jon truly is on a mission to continue driving MS conversations to make a difference and improve the quality of life for people living with MS and for their families. He is the loving caregiver for his wife, Jeanne, who was diagnosed with secondary-progressive MS in 1997.

Jennifer and I had the good fortune to meet and advocate with Jon earlier this year at the annual NMSS Public Policy Conference in Washington, D.C. He has a great story to tell about Real Talk MS, and we appreciate that he took the time a few weeks ago to chat with us so we can share it with you here.

In sickness and in health, forever

The Californian couple were married for just five years when Jeanne was diagnosed with MS. Her disease rapidly progressed. She no longer could use her arms or legs and soon her MS affected her vision, cognition and ability to consistently speak or swallow.

Jon was a leading digital marketing communications consultant in Los Angeles whose high-profile clients included several celebrities and the City of Los Angeles. But when Jeanne’s illness became more aggressive, he knew where his time was best spent.

“She needed someone to be there with her, and I wanted that someone to be me,” Jon said.

His wife must stay in bed throughout the day and now lives in a sub-acute nursing facility. And Jon visits her every day that he isn’t traveling for MS-related events.

Lifetime commitment to the MS community

Helping others with MS, especially those with progressive forms of the disease and their caregivers, quickly became Jon’s mission.

In addition to facilitating a caregiver support group and offering individual coaching for caregivers, he serves as one of three lay members of the Scientific Steering Committee of the International Progressive MS Alliance.

Something that is thrilling for Jon is the recent attention progressive forms of MS are receiving from researchers, medical professionals and the pharmaceutical industry. This includes more focus on myelin repair, restoring function in MS and the introduction of the first-ever disease-modifying medication for progressive MS.

“It’s like for years there was a parade going by for everyone living with relapsing-remitting MS, and the people with progressive MS could just watch and ask, ‘Where’s our parade?’” he said. “It’s like we finally are getting our own parade.”

And with these parades, Jon has a platform that gives people something to talk about.

Production of the podcast and plans for the ultimate guest

Jon said he spent months researching how to actually produce a podcast and what he wanted his program to accomplish. One particular program inspired him.

“If imitation is the sincerest form of flattery, I meant to flatter the New York Times with the format of Real Talk MS,” Jon told us.

When it comes to the information he includes within each 30-minute podcast, he said it literally is somewhat personal. While he’s always thinking of the listener and things they want to hear about, he also thinks about things that he—as a caregiver for a loved one with MS—wants to hear about.

Such a podcast would have helped him and his wife when they were first dealing with her diagnosis.

“The scariest time with MS is when you’re first diagnosed. It’s a time of tremendous anxiety, and I hope this podcast can help to provide people answers and give them ideas and options to consider,” Jon said.

He has had many conversations with top researchers, physicians people within the MS community. This includes former Representative Donna Edwards, who worked to pass the Affordable Care Act in 2010 and then was diagnosed with MS in 2016 and Tim Coetzee, chief advocacy, services and research officer at the National Multiple Sclerosis Society.

Jennifer and I actually were honored to have Jon interview us for his podcast that appeared for the inaugural Progressive MS Day March 28.

And Jon was quick to respond when we asked him if there were any people on his interview wish list.

“The person who is credited with finding the cure for MS,” he said. “that will be the last person I interview for Real Talk MS.”

We’re looking forward to hearing that one as well, Jon.