Author Archives: Hawken Miller

We Need to Learn How to Love Ourselves

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…

Organizations Rally to Help Ukrainian Rare Disease Patients

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,…

How I’m Living on My Own With Duchenne

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…

Taking Steps to Raise Money for FSHD — 2,000 of Them!

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…

I Can Still Fight Without Throwing Punches

When we think about fighting, we might imagine the Ultimate Fighting Championship ring, where men and women beat each other up in front of millions of fans. Or we might see soldiers firing machine guns, or Darth Vader and Luke Skywalker trading blows with lightsabers. Our minds probably…

The Power of a Duchenne Smile

We can all smile, but there’s one type of smile that shows genuine positive emotion and is nearly impossible to fake. The zygomaticus major muscle in the cheek pulls the lips upward while the orbicularis oculi around the eye activate, wrinkling the outside corners of the eyes. It’s true happiness…

Rare Disease Day Panel Opens Window to Patient Experience

BioNews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…