Columns

Since early childhood, we have all strived to become independent. We want to be able to do things on our own. However, to achieve independence with Duchenne muscular dystrophy, we must flip the typical definition of the word on its head.  When we think about…

I am proud to say that Muscular Dystrophy News Today is running a great initiative called “30 Days of MD.” This series of stories by patients, caregivers, researchers, and others will continue for the duration of September and will end with the day now recognized as LGMD Awareness…

This past weekend, I had the opportunity to take part in a very special conference in Chicago. I’d had the honor of seeing this event grow from the idea stage; the first planning meetings were over a year and a half ago. This was a watershed moment, as…

For most of my life, I’ve suffered from viral-induced asthma. While coughing and wheezing are often a constant with standard asthma, viral-induced asthma is triggered by infections such as the common cold or the flu. My first asthma memory was during my first-grade year. I missed a month of…

Life can get hectic sometimes, especially when you are dealing with a rare disease such as Duchenne muscular dystrophy. However, you shouldn’t let your busy schedule prevent you from making regular visits to your primary care physician or neurologist. At routine appointments, your doctors can track your…

When I first started my search for a possible partner in life, all I asked for was someone who’d love me and understand my rare condition, mitochondrial myopathy. I never imagined I’d find a person so determined to help me experience everything life had to offer.  From the…

Let’s really get serious about what accessibility is. The website Disabled World calls it the “‘ability to access’ the functionality, and possible benefit, of some system or entity.” In short, the more people who can use the product, service, or venue, the more accessible it is. This is a…

Last week, I wrote an open letter to parents of kids with Duchenne muscular dystrophy. Now I want to offer some words of advice to those kids. Your parents love you and will sacrifice a lot for your well-being. That means you have an even greater responsibility as a…

Let me make it clear that I am not opposed to questions about my disease and why I use a wheelchair. In fact, I encourage them. I mean, we might as well talk about the elephant in the room, right?  By this point in my life, I’m basically an…

Whether your child has been living with Duchenne muscular dystrophy for years or was just diagnosed, I’m here to remind you that it isn’t the end of the world. It’s just the beginning, and there’s more hope than ever.  You have…