Author Archives: Halsey Blocher

I still remember exactly what I was doing when news broke that Evrysdi (risdiplam) had been approved by the U.S. Food and Drug Administration (FDA) in August 2020. Up until that point, it had been a pretty ordinary day. It took only a moment to become…

It’s hard to say exactly what impact rare disease awareness has had on our world. What has it taught us? Those of us with SMA and other rare diseases are keenly aware of the benefits that years of advocacy, research, fundraising, and education have brought to our disability…

Who would’ve thought that something as mundane as straws could become a hot topic? Yet in recent years, they’ve been featured in countless news stories, sparked debate, and been targeted by well-meaning environmental movements. I like to think I know a few things about straws. I’ve been utilizing them…

Have you ever felt like there could be someone spying on you by listening to your private conversations? Well, perhaps that sensation is being caused by your virtual assistant. Yes, I’m talking about those helpful little devices that sit on the corner of the table or dwell in your…

One glance at my medical records will very clearly tell you that I’m not exactly healthy. The information contained within my chart includes a primary diagnosis of spinal muscular atrophy type 1 and a list of medications prescribed to treat that disease and manage its…

Last month, I sat at the kitchen table intently wrapping a birthday present as the sunlight began to fade. My home health nurse sat beside me in the dwindling light, with a piece of tape on her extended finger for when I would need it. “I…

I tend to attract attention while out in public. It’s not really because I behave in a way that draws attention. It’s just that people in wheelchairs toting a menagerie of medical equipment and an entourage are highly noticeable, whether we want to be or not. Ironically, we stand…

It takes a lot to manage daily life with SMA. From the mundane to the extraordinary, everything I do — although it takes much more than just myself — requires a practiced juggling act consisting of medications, specialists, assistive technology, medical equipment, appointments, adequate rest, and helping hands.

Right about now, most people in the U.S. are preparing for Halloween by buying candy for trick-or-treaters, making costume alterations, and planning parties. That’s all fun, but since childhood, I’ve been drawn toward a different holiday: el Día de los Muertos, or Day of…

I love to go out and explore bits of the world with family and friends. Dinner at a restaurant, coffee dates, shopping trips, festivals, vacations — all of these are awesome activities. It takes some effort and teamwork to get my medical equipment out the door…