In a speech to hundreds of people at my nonprofit organization’s annual gala, my mother stood at the podium and delivered her words poignantly and eloquently. She has always had a way with words, knowing what to say at the right time while leaving the audience…
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Not long after our third baby, Jeffrey, was diagnosed with spinal muscular atrophy (SMA), my mother received a note from her cousin, who mentioned her two granddaughters’ “muscle disease.” Having believed for years that the girls had spina bifida, we learned quickly, though not totally shockingly, that…
The house is full of chatter while our kids — Ava, 13, Henry, 11, and Ella, 10 — talk to each other and play video games. The doorbell rings as one of Henry’s friends arrives. Henry puts his shoes on and is out the door,…
Not everyone likes it. A while back, I was talking to a friend in Singapore who also has SMA. She mentioned that although she wanted to post something for SMA Awareness Month, she was struggling to balance her desire to advocate and raise awareness with her desire to, as…
As we drove into the parking lot adjacent to a tried and true trailhead, the hollow moon had climbed into the bluest corner of the sky. Drifting thunderheads were perched atop the distant tree line like pensive giants. “Beautiful day for a hike,” I said to my companion,…
As the fall approaches, we are getting ready for school and extracurricular activities. All of our kids — Ava, 13, Henry, 11, and Ella, 10 — are musically gifted. Ava has played the violin since she was in fourth grade. She takes lessons privately through the…
Full disclosure: Although I was an English major in college, I didn’t read all the books I was supposed to. Oops. As I think back to my days as a student, I was so focused on the idea of getting the grades I needed to…
When it comes to storms, I’m a dog with high levels of anxiety. Don’t get me wrong, I love the rain. A gentle rainfall is the perfect backdrop to at least half of my favorite activities. But storms are a different story. Storms are thunder and lightning and impending…
August has always been one of my favorite months. Not only is it an ideal time for enjoying lots of fresh air, but it also happens to be SMA Awareness Month. The entirety of August is dedicated to informing the world about this rare disease…
It’s officially August, which is kind of hard to believe. Nonetheless, many people in the SMA community have anticipated this month for quite some time. Not only is it SMA Awareness Month, but it is also when the U.S. Food and Drug Administration was expected to…
