I turned 30 on June 29, which I suppose is why this year’s Cure SMA conference was so difficult for me. You can’t pass from one decade to another without reflecting on everything you have — or haven’t — accomplished. That type of reflection is particularly difficult when surrounded…
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Molecular markers in the liquid that surrounds the brain and spinal cord, called the cerebrospinal fluid (CSF), may help predict how well people with type 2 or 3 spinal muscular atrophy (SMA) respond to Spinraza (nusinersen), a study reports. The study’s researchers found that certain CSF molecules involved…
A group of questionnaires called PROfuture can meaningfully measure a variety of symptoms of spinal muscular atrophy (SMA) that impact patients, a study reported. “The PROfuture questionnaires, developed by patients for patients in the current era of new treatments for SMA, can help to better characterize the impact of…
I love to travel! A trip to England this summer was my first journey overseas from my Indiana home, but I’ve been to a lot of beautiful and amazing places in the U.S. and Canada over the years: mountains and canyons, beaches and forests, oceans and lakes, national parks and…
Joanna Buoniconti is a writer and editor based in western Massachusetts. She was diagnosed with SMA type 2 in 2000 at 10 months old. Aside from writing, she has a book editing business and contributes a monthly column about disability advocacy to a local newspaper. In her free time,…
“My SMA will weed out all of the undeserving jerks on the dating scene for me,” I once thought. Reader, I was not at all correct. Oh, how naive I was in my early 20s. In my defense, I was happily committed to a relationship with my now…
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