There’s a paperweight that sits on my desk that reads, “People are going to stare. Make it worth their while.” Apparently, a man named Harry Winston stated this. I did a quick internet search of the fella, and it appears he was a well-known American jeweler in…
Columns
Throughout my life, I have been blessed with some of the best friends a human could ever ask for. A few columns ago, I talked about spending a good portion of the past year with my friend, Sam. I want to dedicate this column to…
Always have a backup. For the first time in her life, Ella is attending Muscular Dystrophy Association (MDA) Summer Camp. We had prepared for this adventure for weeks, reassuring her that she’ll be all right without her parents (for the first time in…
There’s that old saying about how when one door closes, another opens. The original quote by Alexander Graham Bell is, “When one door closes another door opens, but we so often look so long and so regretfully upon the closed door, that we do not see the ones…
It’s ironic. I’ve been sick my entire life, but only in the past few months have I really felt chronically ill. I’m slowly, if not reluctantly, coming to terms with the fact that my sinus issues are chronic. A round of antibiotics and a hot…
What is the first thing you do when introduced to someone? You start off with a simple greeting, state your name, and extend your hand for a firm handshake, right? I know I’m going out of my way to state the obvious here, but stick with me. This…
Family is important. A supportive family, both immediate and extended, is so beneficial when raising a child with SMA. People often do not know how to help. While there is no set of rules for how they can help, the best rule of…
There’s no denying that SMA can be brutal, taking more than just physical ability from those it afflicts. It can be a burden mentally, emotionally, and financially, as this recent study noted. However, if you have read my columns for…
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.
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…
