Author Archives: Hawken Miller

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned how to turn those trials into triumphs. At age 9, a stroke due to his disease left him paralyzed…

Rare Disease Day, a global push for rare disease awareness, is less than a week away, on Feb. 28. As someone with a rare disease myself, I’ve heard the word “rare” quite a bit in my life. It’s a beautiful rallying cry…

In the last year, it’s been easy for me to coop myself up in my room and spend the entire day without stepping outside once. I’m either afraid of getting COVID-19 or I get caught up with work, and by the time I…

I’m a self-described gamer, and proud of it, but lately I’ve realized I’ve probably been playing too much. Two weeks ago, during online church services, we talked about fasting, including from things beyond food, such as social media and TV. That raised the question with me of why not trying…

Since my internship at The Washington Post, I’ve done freelance work at outlets ranging from The Forward, a Jewish-focused website, to Dot Esports, and of course, BioNews, the publisher of Muscular Dystrophy News. In the past year and a half, I’ve realized that working for…

Christmas is upon us, and for many, it might not even feel like the holiday season at all. We’ve been forced to stay away from family, our finances are tight, and uncertainty lingers about how 2021 will unfold. For me, being cooped up…

Having Duchenne muscular dystrophy is scary for a number of reasons. High up on that list is experiencing a fall. That’s especially true for those who have been on steroids for many years. Our bones aren’t as strong because of it. For those of…

I always hope to impart a positive message to my readers and exude joy in life whenever possible, but I also know it’s OK to be upset, even angry, at times. I have to face the peaks and valleys the same as anyone else, but I also have…

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…

The Muscular Dystrophy Association (MDA) announced last week it had selected former MDA vice chairman of the board Donald Wood, PhD, as the new president and CEO of the organization, taking over from Lynn O’Connor Vos. Wood most recently was the vice president of institutional…