Hawken Miller,  features writer—

Sometimes we need wake-up calls in life. They are near misses that tell us we need to make a change, approach a problem differently, or alter how we interact with others. These can take the shape of a car crash that tells us we need to pay attention and get…

This week’s column will be slightly different than normal. I reached out to fellow Muscular Dystrophy News Today columnist Betty Vertin, who has three boys with Duchenne muscular dystrophy (DMD), ages 16, 13, and 11, to seek her collaboration. I asked Betty five questions about life with Duchenne,…

A conga line of people snaked through shaded outdoor tables as the setting Florida sun warmed their faces. For all the conga lines one can imagine, this one was slightly different — people in wheelchairs were also grooving to the music. They had Duchenne muscular dystrophy (DMD), and they…

The last time I traveled on my own without my parents was last May, when my friends and I went to Hawaii. While my parents did come with us, they kept to the hotel room and let us explore. Being away from the comfort of home made me realize I…

There are a lot of things to hate about Duchenne muscular dystrophy. Last weekend, I found myself uncontrollably crying while FaceTiming a friend as I was explaining why I wanted to be in a relationship before I lost the ability to move my muscles at all. It’s hard to…

A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…

When I went off to school at the University of Southern California (USC), it was the first time, like many other 18-year-olds, that I would be living away from home. It was an especially huge change for me because of my Duchenne muscular dystrophy and my reliance on my…

Twins Oscar and Sebastian Spink, 11, may not be your typical “Avengers” superheroes, but they are certainly pursuing a gargantuan task that would have impressed even Tony Stark. The boys, diagnosed with facioscapulohumeral muscular dystrophy (FSHD) in 2019 and die-hard fans of the Marvel Cinematic Universe, are attempting to…

We throw around the word “community” a lot in the rare disease space, but don’t always think about what it really means and how it’s vital for patients, family, friends, and caregivers. I rarely see anyone in a wheelchair in public, let alone a power chair. Growing up, I didn’t…

The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…