For the second It’s a Lot episode of Rare Disease Month, I spoke with Tyler Lima-Roope, a content creator and advocate who has spinal muscular atrophy (SMA). I’ve followed (and admired!) Tyler for years and was so excited when he said yes to chatting. Tyler was one of the first people I thought of after my son was diagnosed with SMA, and I’ve used his content as an example of fantastic storytelling in the college level social media course I teach.

We talked about the joy of opening new baseball cards, what it was like growing up with a disability, falling in love and being in an inter-abled relationship, the ridiculous limits on income and assets for folks on SSI, and lots more. In the second half of the episode, we explored his career as a content creator, the temptation to make a fool of yourself just to go viral, the feeling of being stuck in a box because people expect a certain type of content from you, and brand partnerships Tyler would love to do.

February is Rare Disease Month, so on It’s a Lot, we’re doing a mini series focused on spinal muscular atrophy (SMA). My son was diagnosed with SMA a few days after he was born, and then received an incredible gene therapy treatment less than a month later. The experience was a lot to go through, as you might imagine. I’m grateful I can share our story and hopefully help other people.

For the first episode of the mini series, I talked to my son’s neurologist, Sam Mackenzie, M.D., Ph.D. I was super curious about what it’s like delivering a life-changing diagnosis to a family, what you learn in med school about empathy and bedside manner, and how Sam ended up a child neurologist in the first place. We also discussed our flawed healthcare system and his hopes for a better one as well as what people can do to help disabled folks in the U.S. If this episode makes you want to support research, the TANGO2 Research Foundation is a great option! And if you want to go more in depth on child neurology, make sure to check out Sam’s podcast, Immature Brains.

In the second half of the episode, we chat about Sam’s experiences as a father of three. He shares his thoughts on parent guilt, his existential fears about how AI will impact his kids’ lives, why risk can actually be a good thing, and lots more.

Lastly, to learn more about SMA and how you can support the community, check out Cure SMA.