Finding the Sweet Spot
A few weeks ago, when I was preparing for my eighth Spinraza injection, I had to indulge in an activity that many of us with SMA dread. We manage everything from pneumonia to travel fiascoes, but having to get blood drawn is…
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Learning Self-love from My PCA’s Daughter
When I first met Elena, my patient care assistant’s daughter, she was almost 2, with chubby cheeks and golden ringlets of hair. She was shy — painfully so. It took her months to warm up to me, and even then she…
Small Spinraza Changes Yielded Big Results
I believe that the smallest changes can often yield the most impactful results. Someday when you reflect on your life’s culmination of little moments and modest actions, you will realize they’ve mattered more than the grand gestures. Just like the tiniest pebble can create a ripple effect so too can…
Sweet Dreams Are Made of This
The past two and a half years have seen a whirlwind of celebration in the world of SMA. What I consider one of the best gifts possible for families arrived on Dec. 23, 2016 when, for the first time ever, the FDA gave its approval to an SMA…
Ella’s Classroom Aide Follows Her to 4th Grade
We live close to Prairie Elementary School, where Ella and Henry attend. Ava’s in junior high at another location. Henry has just finished fourth grade and will be “king of the hill” in the fifth grade next year. Ella has completed third grade and is excited to…
My Vulnerability Isn’t the Result of a Spiritual Awakening
“You’re so vulnerable! How are you OK with that? It’s such an open way to live life. It’s beautiful.” Oh boy. Firstly, this is a weird thing for someone to say. I don’t know how to respond to it. So, my response often…
Research Advancements and Adults with SMA
On May 24, Zolgensma (previously known as AVXS-101) became the second FDA-approved treatment for SMA. This gene therapy from pharmaceutical companies AveXis and Novartis is a major milestone for the SMA community, as it follows Biogen’s groundbreaking treatment Spinraza (nusinersen)…
Trailblazing Toward a More Inclusive World
I recently spoke at an event called “OutWiGo Girls” for the Wisconsin Department of Natural Resources in the enchanting woodland area of Kettle Moraine State Forest. Held in celebration of gals of all ages who share a love of exploring nature, the event’s agenda revolved around an array of…
I Feel Gratitude in the Wake of Zolgensma
Everyone and their mother is talking about Zolgensma (AVXS-101). Just like what happened with the release of Spinraza (nusinersen), people everywhere are sharing links to news stories on the groundbreaking new medication. I feel more or less the same as I did in 2016 when…
Let’s Foster More Acceptance
Last summer, I wrote about how having SMA is apparently an open invitation for people to stare at me. It sounds crazy, right? It’s almost as though people in wheelchairs are about to go extinct, so passers-by need to get a good, hard look at our kind. OK, I’m…
