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I rely on caregiver support to maintain my independence

A few weeks ago, my mother injured her foot, temporarily limiting her mobility. As she struggled to get around, relying on others for assistance, she looked at me and said, “I never realized how hard this is.” That moment stuck with me — not because I was surprised, but because…

‘What can a pain specialist do for you, anyway?’

First in a series.  “All right, I have to go. Bye, Sherry,” my then-new pain specialist said. “I hope I won’t see you for a few months.” That was a few days after he’d administered a caudal epidural nerve block for my chronic neuropathic pain, almost a month after…

Disabled people have hearts to serve others, too

I didn’t expect to find myself participating in a Valentine’s Day card exchange as an adult. I thought such festivities were (sadly) reserved for kids. But then a friend shared a Facebook post last year inviting people to join a card exchange for anyone with SMA and their…

How new SMA treatments are turning hope into reality

Last month, the biotechnology company Scholar Rock submitted an application to the U.S. Food and Drug Administration requesting approval of an experimental add-on therapy to treat spinal muscular atrophy (SMA). The investigational drug apitegromab is intended to target a protein in the bloodstream that inhibits muscle growth with the…