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…
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…
“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…
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)…
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…
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…
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…
Ella’s sister, Ava, plays the violin and sings in the school choir. She practices her violin at home almost every day. Henry, their brother, plays the piano and practices as well. In fact, he has a piano in his bedroom and plays while we’re getting ready for bed.
I’m a writer. I recently finished the first draft of a 47,000-word novel by hand because I can still write manually — and if you don’t use it, you lose it. And now I’m writing another book. By hand, again.
Those of us who have SMA live surrounded by other people. We rely on others to bathe us, get us dressed, help us eat, move our hands, drive us to work, and to be available for any other tasks we may need assistance with throughout the…
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