I’m about to date myself, but hang with me for a sec. Back in my day (which wasn’t really that long ago; I’m not that old), online school was unthinkable. Perpetually online folks like me were seeing the writing on the wall and begging people in power to embrace the…

When my mother was 7 years old, she moved to the United States without knowing a word of English. I’ve known this all my life but had never asked her what the experience was like until recently. After questioning her about it, I learned that my grandparents had sent her…

When I graduated with a master’s degree in 2020, people kept asking me if I’d ever go back to school. I looked them in the eye and with all seriousness said, “Over my dead body.” Well, color me pallid, because it turns out I was wrong. It was my mom’s…

While living with SMA, I’ve been on the receiving end of many people’s misconceptions about the disease. To an extent, I understand their lack of awareness; there are many diseases and conditions that I don’t know about, either. But there’s a fine line between not understanding the complexities of…

From my perspective, the typical path to becoming a journalist looks like this: First, you enter the formal education system and learn what you can from kindergarten till high school. Then, you try to figure out what you’re going to do with your life for the next several decades. You…

Back in 2019, I signed up for an online women’s health and rights course by women’s rights activist and Stanford teacher Anne Firth Murray. It was a spur-of-the-moment decision; I’m not even sure I was truly interested in it back then. While I considered myself a feminist, I was wary…

I spent a school year substituting in various special education classrooms in Fort Worth, Texas, before returning to school for teacher certification. I’d already worked with young children with developmental disabilities and loved their (usually) carefree and good-natured dispositions. My first assignment as a substitute teacher at Jo…

Caregivers of children with spinal muscular atrophy (SMA) said they need information about institutions that may benefit their child in the future, a questionnaire-based study suggested. Although caregivers’ burden was not directly related to income or disease type, increased burden was disease-related, the scientists said. The study, “…

To those feeling too rare on Rare Disease Day (Feb. 28) let the following empower you. The saying “hidden in plain sight” can take on a new meaning when you have a rare disease. I’m rare because I have a huge wheelchair and tracheostomy, but that doesn’t mean I’m…

To make my sometimes hazardous life with SMA less scary and more exciting, I tend to think of myself as a pioneer. As my previous column noted, I carry a lot of “baggage,” or experiences, during my travels. In 1803, as PBS noted, U.S. President Thomas Jefferson commissioned…