Hawken Miller, features writer —

Rich Horgan’s younger brother, Terry Horgan, is the inspiration behind Cure Rare Disease, a Boston-based nonprofit Rich established in 2017 to help scientists develop personalized therapies for people with rare diseases. Terry, 24, has Duchenne muscular dystrophy (DMD), which is the organization’s first focus. Besides Terry, three other…

Tonya Dreher wanted to do something dramatic on behalf of Hope for Gus, the New Hampshire-based foundation inspired by her son, Gus, 14, who has Duchenne muscular dystrophy (DMD). In 2015, frustrated with her fundraising efforts on behalf of DMD research, she came up with…

Stretching has been part of my daily life since I was diagnosed with Duchenne muscular dystrophy (DMD) about 17 years ago. Every night, my parents would reserve 30 minutes to do passive stretching, and I saw a physical therapist regularly. We didn’t do it because we wanted to, but…

I realize that having a full-time job as well as Duchenne muscular dystrophy can be challenging. Balancing my time between self-care, including stretching and doctor’s appointments, and work can be physically and emotionally draining. That’s why you must find a job that is a good fit for your situation.

Power chair use can feel like a burden. Most people I hang around don’t use a wheelchair so it makes me feel out of place. I also have to find alternate routes to get into places like restaurants and offices, which is inconvenient for all who accompany me. However,…

When I pray, I like to start by thanking God for all of the blessings he has bestowed on me. It reminds me of how much I have to be thankful for. We often forget to thank God, our friends, and our families, yet I think it’s important to express…

It can sometimes feel like everything is against us when doctor appointments and physical barriers bombard us. If we focus on the day-to-day challenges, we forget what we’re doing on earth. I recently discovered that practical goal setting helps you accomplish more than you ever thought possible. The mere act…

I recently participated in a panel discussion at CureDuchenne 2019 Futures titled “Friends.” I gave a brief presentation, along with other members of the disease community, on the importance of friendship. From the responses we received, it was clear to us that many parents present at the event were…

I’ve just wrapped up my internship with The Washington Post. My experience has made me think about the added benefits that a job brings. When you have Duchenne muscular dystrophy, a job forces you to find a way to overcome your challenges, helps you to discover your life’s…

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…