Columns

I correspond with a number of friends and acquaintances in the SMA community on a regular basis, but mostly through social media and work. However, there is one friend I met at a conference in 2017 who is a bit of a maverick. Mike has no social media…

When it comes to healthcare, I’ve had remarkably good luck. There are, of course, bad apples. See, for example, the gastroenterologist who rambled about “The Odyssey” as he punctured my stomach lining. Or the surgeon who, in my young, still-developing mind, undeniably had it out for me. (A…

When it comes to healthcare, I’ve had remarkably good luck. There are, of course, bad apples. See, for example, the gastroenterologist who rambled about “The Odyssey” as he punctured my stomach lining. Or the surgeon who, in my young, still-developing mind, undeniably had it out for me. (A…

The stability and self-interacting ability of SMN, the protein that is abnormally low in people with spinal muscular atrophy (SMA), may affect disease severity in rare cases, a small study suggested. Based on their findings, the researchers said new treatment strategies “should be explored” to target these factors,…

Somehow, it’s already been three years since I began sharing my story with you in this column. It’s been a beautiful, heartfelt adventure that I’ve thoroughly enjoyed. But I have to admit that when I invited you to pull up a chair back in 2019, I didn’t…

Somehow, it’s already been three years since I began sharing my story with you in this column. It’s been a beautiful, heartfelt adventure that I’ve thoroughly enjoyed. But I have to admit that when I invited you to pull up a chair back in 2019, I didn’t…

Lying in a hospital bed, I watched as a nurse demonstrated how to use a nasojejunal tube (NJ tube) to my parents. I could tell they were nervous. They learned about an NJ tube only three weeks earlier, and everything about it seemed so foreign. My mother stumbled…

Lying in a hospital bed, I watched as a nurse demonstrated how to use a nasojejunal tube (NJ tube) to my parents. I could tell they were nervous. They learned about an NJ tube only three weeks earlier, and everything about it seemed so foreign. My mother stumbled…

My optimistic crust cracked a bit when I opened the mailbox last week and spied an envelope from my late mother’s life insurance company. It could have been correspondence requesting additional information so they could “process this claim promptly,” or it could have been the proceeds from the…

My optimistic crust cracked a bit when I opened the mailbox last week and spied an envelope from my late mother’s life insurance company. It could have been correspondence requesting additional information so they could “process this claim promptly,” or it could have been the proceeds from the…