Today I want to talk about something very special to my heart: setting goals; and not just for 2023, but also 2024 and 2025. Creating future goals excites me and gives me hope during life’s many storms. I hope you’ll get excited with me. Have you ever worked on…
Since billionaire Elon Musk bought Twitter in late October, I’ve stumbled into the role of being my family’s resident reporter about all things related to the site. It started when Musk gutted entire essential teams with a mass layoff. Then a new verification system allowed people to impersonate public…
With all due gravity, I informed the group chat about my latest hypothesis. “I think I might be lactose intolerant.” “NO,” said one friend. “NOOOOO,” said another. I explained that I’d been experiencing some strange symptoms around dinnertime. Initially, I assumed it had something to do with Evrysdi (risdiplam),…
After high school graduation, I studied abroad through the American Institute for Foreign Study. Based in Oxford, England, our group attended classes at Balliol College and enjoyed side trips to London, Paris, Rome, and Florence, Italy. From shrimp scampi at the Mitre Inn, to rolling hills, rosy cheeks,…
It was about a week and a half into the “Dad has COVID-19” saga. Mom and I were surviving in every sense of the term. We’re all introverts, and we all hate change. So you can imagine how very unhappy we all were. We were safe and our basic…
It takes a lot to manage daily life with SMA. From the mundane to the extraordinary, everything I do — although it takes much more than just myself — requires a practiced juggling act consisting of medications, specialists, assistive technology, medical equipment, appointments, adequate rest, and helping hands. One…
I did something that I’m afraid to publicly admit. Sure, I did it willingly. And in this corner of the internet, I share my life openly and honestly with those who are willing to read it. So it only seems fair that, despite my hesitancy to share this with you,…
Damn Taylor Swift and her lyricism. I had a different plan for this column, with a different title in mind for it. I was going to ramble about moving out of the condominium I’ve been staying in for almost two years. There was to be a farewell to its inaccessible…
Working with the biotech company Genentech never ceases to amaze me. Back in 2019, when Genentech representatives first reached out to me about an upcoming initiative, I had no idea what to expect. They wanted me to attend a meeting, along with several other people in the SMA…
“Your 60s you’ll have a major surgery, the music is still loud but it doesn’t matter because you can’t hear it anyway. Seventies, you and the wife retire to Fort Lauderdale, you start eating dinner at 2 o’clock in the afternoon, you have lunch around 10, breakfast the night before.”…
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