Muscular Dystrophy Association Launches Podcast Hosted by SMA Advocate

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by Hawken Miller |

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MDA Quest Podcast | SMA News Today | portrait of SMA advocate Mindy Henderson

Photo courtesy of the Muscular Dystrophy Association

Mindy Henderson poses for a photo in her wheelchair.

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Today, the Muscular Dystrophy Association (MDA) is officially launching its MDA Quest Podcast, which will feature conversations with neuromuscular disease patients, doctors, family, caregivers, and others touched by the community in some way.

Hosted by Mindy Henderson, who has spinal muscular atrophy (SMA) type 2, the podcast will air monthly on all major podcast platforms. Henderson also serves as the newly minted editor-in-chief of MDA’s Quest magazine, podcast, blog, and newsletter.

Three episodes of the podcast are now available, with topics ranging from coping after a receiving diagnosis, to transportation with a disability, to international travel. The latter includes an interview with SMA patient Kevan Chandler, who penned a book, “We Carry Kevan,” about how his friends hauled him around Europe and China in a custom-made backpack.

One of Henderson’s goals, which will come through in the podcast, is to help make society more inclusive for people with disabilities. The Austin, Texas-based writer and motivational speaker works to build awareness of the challenges her community faces on a daily basis through her social media following, columns and blogs, and a podcast titled “The Truth About Things That Suck.” In the past, she has advocated for the beauty industry to include more people with disabilities and legislation that would make air travel more accessible.

“We’re trying really hard to incorporate a lot of different perspectives on these topics that we’re tackling,” said Henderson, 48, in an interview with SMA News Today. “We’re not shying away from some controversial topics, like disability language. We really want to debate those things and help people to decide where they stand on things and what the standard should be.”

The voice behind the podcast

Henderson, who was diagnosed with SMA at 15 months old, will share her experience about growing up and becoming a successful professional despite the added challenge of having a neuromuscular disease.

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“The common denominator between every single person on the planet, whoever reached a goal, regardless of what that goal was, was that they didn’t quit,” Henderson said. “That’s become kind of a mantra for me on those hard days. I just took one more step and it got me to some really exciting places.”

Her long relationship with MDA started when she was 4 years old and  became MDA’s State Ambassador for Texas. She gave her first speech at that young age and met people at events who were raising money for the organization. It was one of the first instances where she saw a negative circumstance turn into a positive one, she said.

Henderson credits her parents with raising her in a way that didn’t allow her to use her disease as an excuse not to participate in extracurricular activities or succeed in school. They had the same expectations for Henderson as they did for her sister without SMA who was 21 months older.

“I sit down all the time,” Henderson said, recalling her upbringing. “But I went to school, I went to friends’ houses, I went to art class, I took piano lessons, all of those things. And that was the mindset that I had growing up.”

It also never occurred to her until college at Texas State University that having a disability would make life any more difficult. Henderson and her mom spent the year before working with the school to ensure she would move into an accessible dorm. And she’s approached each difficulty after that in the same way.

“It’s just a question of setting goals for yourself, knowing what you want out of life, and being flexible enough and patient enough to work through the challenges and the problems to make those things happen,” Henderson said.

Changing gears

Before she changed her career trajectory to become a writer, motivational speaker, podcast host, and now editor-in-chief, Henderson spent 20 years working her way up in the corporate world, becoming a product manager at Bank of America and, most recently, manager of delivery operations at Bazaarvoice, a software company that connects brands with user-generated reviews about their products.

Three years ago, one of the companies Henderson worked for was acquired and she lost her job. For two to three months, Henderson felt as if none of the positions she was interviewing for “clicked.”

“Truly in that moment, I could either become the worst version of myself and become angry and frustrated, or I could take my own advice and write a book about adversity while I was going through this,” she said.

That led her to spend more time writing and speaking about her condition. Three years ago, she left her tech job to pursue that career path full time, freelancing for outlets like Quest and preparing for her current editor-in-chief role.

She recently signed a deal for her book, “The Truth About Things That Suck,” which will come out in fall 2022. That title, according to the podcast’s website, addresses the fact that some things really do “suck,” while at the same time explaining how those things can be learning experiences and can lead to positive outcomes.

Henderson has hosted seven episodes of the Quest podcast so far — three complete and the rest in various stages of production. Talking to all types of people involved in the neuromuscular community has been elucidating for Henderson.

“It’s been eye-opening to see not only the different perspectives and ideas and thoughts that people have about things, but to see just how many people there are out in the world doing amazing things to perpetuate progress, inclusion, and recognition of the community of disabled people,” she said.