I recently attended The Speak Foundation’s 11th Annual Conference. This event is for individuals with neuromuscular diseases and their families. We met in the beautiful city of Atlanta, for what turned out to be an exciting few days. This was also a fitting prelude to the upcoming National…
Columns
Duchenne muscular dystrophy is not easy for people to wrap their heads around. Most haven’t heard of the disease, which is rare and affects about 1.02 males ages 5 to 24 per 10,000 in the United States. When people see me walking, they might…
It’s hard to find time to spend outside, especially since I have a disease that hampers my mobility, but being outdoors reinvigorates and reboots me, and reconnects me to nature and God. During weekends I could lie under the covers well into the afternoon and watch…
Spoiler alert: This column contains stories from the book “Strangers Assume My Girlfriend Is My Nurse,” by Shane Burcaw. It was during one of my late night YouTube browsing sessions when I happened upon a video about an interabled couple whose names are Shane and Hannah. I was intrigued, seeing…
I recently started my internship at The Washington Post in Washington, D.C. Getting to this point was a culmination of blood, sweat, and tears throughout all levels of education, and it’s not going to get any easier in the professional world. Establishing myself…
This column is a particularly nice one for me to write because of my love of bicycle riding. I began to bike in 1988. I was 29 years old and looking for a better way to stay active while enjoying the months of nice weather in Chicago. Stationary bicycles are…
My early years in this world were spent being a girlie girl. Along with my stash of crowns and fake pearls were things like brightly colored nail polish and some mini lipsticks bought at Sally’s Beauty. Little did I know that as I grew older and my mitochondrial myopathy…
Watching YouTube videos allows me to simultaneously learn something new, laugh out loud, and connect with the gaming community. I never thought I could start a YouTube channel on my own. With the small number of videos I’ve produced on the…
Last week’s column, “Uniting to Effect Positive Change,” focused on the bigger picture of advocacy. This form of advocating is about a larger movement and changing the society we live in. I have heard from many people wanting to get more involved. I cherish this because the time is…
Combining medical appointments with school, work, and finances can sometimes overwhelm me. My mom used to be the keeper of my schedule, but now it’s all up to me, and the pressure is on. The best way for me to reduce stress when everything seems to happen at…
Recent Posts
- I rarely answer honestly when asked, ‘How are the boys doing?’
- Trial testing gene-editing therapy PBGENE-DMD gets FDA green light
- A winter blizzard had me cooped up at home for days
- New Phase 3 trial of Duchenne gene therapy SGT-003 to begin dosing
- The rule of 10 helps me navigate bad days with LGMD