I have spent my entire career working and volunteering in the nonprofit arena. My focus has moved from mental health to aging to disabilities. I learned from each step and took that knowledge into the next phase of my life. There were always things I could use in the future.
Sometimes life with a chronic invisible illness can feel backward and upside down. As if anything that I do, whether positive or negative, could come back to bite me in the butt. It’s dizzying to try to predict people’s reactions to something as simple as a photo of me showing…
“That’s right. You’ll be able to resume your regular diet after gallbladder removal.” My surgeon’s words ring in my ears as my television airs food commercials and I chomp on carrot sticks. Two weeks after my operation and I’m finally back to my old self. I can flaunt my skinny…
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…
We often have the radio on at home in the mornings to keep up with news and events. I was working at my home desk recently when I heard an astonishing comment from an on-air guest on a program broadcast by our local radio station. The guest was discussing the…
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…
My first column for Muscular Dystrophy News Today focused on the excitement of starting something new in life. I promised that future columns would focus on the many adventures awaiting us. The hope of traveling and seeing the world is exciting. And companies are offering better information about accessible…
In the summer of 2017, I received an email from a woman named Serena Lawrence. She had discovered me on Instagram, and had learned about my past ambassadorship with the Muscular Dystrophy Association and my blog “Millennial On Wheels.” She told me about a job opening as a columnist…
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…
I am proud to say that Muscular Dystrophy News Today is running a great initiative called “30 Days of MD.” This series of stories by patients, caregivers, researchers, and others will continue for the duration of September and will end with the day now recognized as LGMD Awareness…
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