Last week, I wrote about the personal impact that this year’s Cure SMA conference had on me, as well as the relationships I built during that week in Dallas, Texas. In this column, I’ll be sharing my perspective on the research component of the conference.
Columns
It’s easy to forget how inaccessible the world is, especially when you’ve spent the last week and a half scrolling through social media feeds and catching up on sleep. Even when I was in Indiana, surrounded by people who were smarter than me, I found myself…
Today’s column is brought to you by the gratitude I hold in my heart for friends who give sound advice and are always willing to talk about the hard stuff. I think that’s a key ingredient to living with SMA: getting comfortable with talking about the things that…
Ella loves her friends. She loves going to school each day just to see them. She raves on and on about how helpful they are and how funny they are. She’s a very social person. Just recently, we received an invitation to…
I guess the cat’s out of the bag. The featured photo here is the first official cast photo of Amazon’s upcoming “The Lord of the Rings” television reboot. Apparently, they wanted something different and modern, hence the name “The Fellowship of…
I meant to write a column while I was in Indiana. I even imagined what it would be like to sit on campus, enjoying the sunshine and pleasant bustle of the counseling center with my new Pixelbook sitting on my lap tray. The reality of the…
When I was in 8th grade, I had an English teacher who saw right through me, in a good way. She didn’t give me special treatment, but she understood my needs and limitations, and respected them. Most importantly, she certainly didn’t walk on eggshells around the “innocent” girl…
Coming up with topics to write about can be a challenge. I was trying to settle on a topic yesterday, and it occurred to me that I have yet to cover my life philosophy: “One day at a time.” This concept has entirely transformed my life. I…
Dogs are great. We have two of them. Potter and Ginny are Hungarian hunting dogs; the breed is known as Vizsla (vee-z-shla). Vizslas are extremely family-friendly. They are known as “Velcro Vizslas” because they stick so close to their owners. Ella and…
At the time of writing this, I’m sitting in my hotel room for the 2018 Annual Cure SMA Conference. My caregiver and his girlfriend are here with me, my parents are at dinner enjoying themselves, and this room is both accessible and spacious.
