One of my rules is that nurses cannot care for me when they’re sick. Although this creates challenges, I don’t want to risk exposure. Because I live with SMA, the repercussions of a virus or other cause of illness on my health would be severe. Another thing that creates…
Damage to blood vessels in the spinal cord may play a role in nerve cell loss in spinal muscular atrophy (SMA), a new study suggests. A detailed examination of spinal cord tissue from infants who died from severe SMA detected abnormalities in the cells that line spinal cord blood…
Discussion
Countless events shape the course of our lives: marriage, career changes, parenthood, the loss of loved ones, and health crises, to name just a few. The list is almost endless. After eight years of marriage, my husband, Randy, and I decided we were ready to start a family. Overnight, my…
Discussion
I love to volunteer. If I see a need that I can meet, I am eager to jump in. And if someone asks me to help with a project or service, I am quick to say yes. So much of my life with spinal muscular atrophy (SMA) requires me…
Discussion
On a perfectly mundane February afternoon, my mom and I drove to downtown St. Paul, Minnesota. It’s a new ritual now that I’ve transitioned most of my care to Gillette Children’s Specialty Healthcare. Every six months or so, I spend the afternoon at their adult clinic, where I am…
Spinal muscular atrophy (SMA) is associated with multi-organ changes in a protective protein modification that helps guard cells against molecular damage, according to a study in mice. The researchers also found that treatment with antisense oligonucleotides — the same type of SMN-targeting approach used in Spinraza…
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