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Empathy is often described as the ability to imagine yourself in another’s shoes, see the world through their eyes, and feel the weight of their experiences as if they were yours. But empathy is more than just a fleeting sense of understanding. It’s the heartbeat of human connections. It bridges…

Let me explain something called “pee math.” I was familiar with the concept, but didn’t realize it was a common experience in the SMA community until a colleague brought it up. It goes like this: When boarding a flight, you calculate how much liquid you can drink before…

Have you ever dreamed of being a princess (or a prince)? I think most of us have, adults included. I’ve always been a Disney fan, and it has no shortage of princesses to choose from. Each one is unique, so it’s usually easy to find at least one you can…

Many things help me live with SMA, but light plays a special role in my life. There is actual physical light, such as from the sun, and then there’s the light of hope. I’ve written a lot about the latter, and it’s so special that there’s more for me…

Our baby Jeffrey, who was diagnosed with SMA in July 1997, made the most of his brief earthly stint. I’ve mentioned before that our SMA duty, which lasted mere weeks between Jeffrey’s diagnosis and his death, enabled us to experience prayer and faith in ways that words can’t describe.

If you have SMA or care for someone with the disease, you’ll know what I mean when I say we get sweaty. At first I thought it was just me, but then I read somewhere online that folks like me have sweaty palms. This moment was one of those…