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It’s been about two years since I got a message from a friend saying that she would miss seeing me at Turnstone, the local disability center. Earlier that day, an announcement had been made that the building would be closing for an undetermined amount of time…
Most of the children with spinal muscular atrophy (SMA) who received the gene therapy Zolgensma (onasemnogene abeparvovec) in their first weeks of life are able to walk independently within developmentally normal age ranges, according to new research from the SPR1NT clinical trial. The findings were presented at this…
Back in 2019, I signed up for an online women’s health and rights course by women’s rights activist and Stanford teacher Anne Firth Murray. It was a spur-of-the-moment decision; I’m not even sure I was truly interested in it back then. While I considered myself a feminist, I was…
Back in 2019, I signed up for an online women’s health and rights course by women’s rights activist and Stanford teacher Anne Firth Murray. It was a spur-of-the-moment decision; I’m not even sure I was truly interested in it back then. While I considered myself a feminist, I was…
In the RAINBOWFISH trial testing oral Evrysdi (risdiplam) in babies with spinal muscular atrophy (SMA) but no evident symptoms, most of the seven children treated for at least one year were able to stand and walk within developmentally normal windows. These new data were presented at the Muscular Dystrophy…
It all started so innocently. Let me start with a clarification: I did not fall prey to a multilevel marketing scheme. I will not barge into your DMs with “an opportunity” — or, in other words, a “proposal” — that will benefit the both of us. I’m not trying…
Today I want to talk more about my outlook on life, as well as yours. Hopefully, nobody who regularly reads what I write ever comes away thinking that I have it all together. I will be working on my outlook and personal growth until the day I die. I…
Is it possible that we might have a bit of input into how we snag our angel wings? It sort of seems like it. Near the end of my senior year of high school, my maternal grandfather underwent an experimental procedure to reduce tremors. It did not…
How would you expect someone with a disability to react upon reading an account of a nondisabled man essentially telling a disabled woman she shouldn’t exist? Would you expect them to react with despair? Fear? Rage? I reacted by laughing hysterically. The chronic pain and increasing fatigue caused by…
Like most things when it comes to Sherry, it was a no-brainer. A few weeks ago, I woke to a string of messages in our shared Discord server. An SMA News Today columnist, she’d been asked to participate in this year’s Rare Disease Day (RDD) panel, organized…
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