The winds howled and the blustery snow started falling early in the day. It was an unusual sight for the last day of October — Halloween. The city was quickly covered in a blanket of wet snow. Driving became slow and methodical, motorists keeping their distance from the…
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Wow, October feels like it was just yesterday. But it also felt like it took 45 years to end. What even is time? My book signing was on Oct. 2. I thought I should probably update you now that it’s November. Holy heck, it’s been a whole…
Recently, I attended the 2019 Cure SMA Chapter and Leadership Conference in Boston. There, I connected with friends I had met through previous conferences and listened to presentations from Cure SMA staff members, as well as updates from the pharmaceutical companies…
I have this nagging feeling that I’m going to die in bed. My parents sleep in the basement, so when I need to be rolled at night, I scream at the top of my lungs until someone hears me. We have a baby monitor that works…
It is truly the most wonderful time of the year. As you read these words, I hope that you are envisioning me spinning in my wheelchair, wearing an oversized cardigan with leaves falling all around me, and resting a pumpkin spice latte on my footplate. When it comes to autumn,…
There are three Casten kids: Ava (12), Henry (11), and Ella (9). They each need our attention, and will ask for it periodically. Our life is quite crazy. Lindsay is still recovering from the amputation of her lower right leg and is facing a complete…
I looked up the definition of “minority group” the other day, and it was defined as “a group that is different racially, politically, etc., from a larger group of which it is a part.” I was prompted to think about the term…
It’s my favorite time of year. I love the fresh autumn breeze that brushes past my face every time I go outside and the fact that it’s socially acceptable to run around in Freddy Krueger and Darth Vader masks. I’m…
Summer has drawn to a close, and Mother Nature has begun painting the trees in beautiful fall colors. As fall arrives, the temperatures also begin to change. Unfortunately, cooler weather tends to be hard on my body, and it takes a while for me to adjust. As temperatures…
Last weekend, my friends and I celebrated my 29th birthday with a brunch that was arguably too classy for us kids. The Champagne endlessly poured, the laughter continuously ensued, and my heart overflowed with feelings of togetherness and gratitude. To complete the first-time experience at this rooftop restaurant, our table…
Recent Posts
- This Rare Disease Day, honor a caregiver in your life
- Trial of next-generation SMA gene therapy GB221 doses first patient
- I’m working to resolve some home equipment malfunctions
- Blood vessel damage may contribute to nerve cell loss in SMA: Study
- The major life changes that led to our family’s SMA assignment
