Two interconnected themes — community and hope — dominated the conversations at a recent gathering of people living with neuromuscular diseases. Lily Sander, MDA National Ambassador, speaking at MDA Engage: Dallas. (Photo by Tara Haelle) Lily Sander, national ambassador for the Muscular Dystrophy Association (MDA), hit on those…
Discussion
When you encourage someone and give them positive reinforcement, it’s like giving them a priceless gift. It inspires people to do their best and makes them feel special. Through my experiences with SMA, I try to encourage others, which in turn encourages me. For example, when new nurses are…
Discussion
It seems we were just approaching October. Now the month is almost gone. Growing up in Fort Worth, Texas, I loved October. Not only did the searing summer heat finally ease, but Halloween was also right up my alley. I regularly scarfed up Alfred Hitchcock movies and…
Discussion
For people living with neuromuscular diseases such as spinal muscular atrophy (SMA), listening to the body and recognizing fatigue and pain is only half the battle. The other half is communicating that information to their care team so they can help. “Pain is a subjective experience,” said Jenny Riecke,…
Discussion
As the days get shorter and the temperatures get cooler, I find my thoughts turning toward Halloween costumes. As someone living with spinal muscular atrophy (SMA), I especially appreciate the imagination a costume can bring to a body and a wheelchair. Forget the excessive sugar-rush candy and the tacky…
Discussion
The 1990s cartoon “Batman: The Animated Series” remains one of my favorite shows of all time. Its mature storytelling and noir aesthetic left an impression on me as a kid, and even today I regularly rewatch episodes. Sure, I love to see my favorite superhero go head-to-head with…
Get regular updates to your inbox.
