Recently, I was teasing my brother about how he apparently doesn’t care about me anymore. (Don’t worry. This couldn’t be further from the truth.) The next day, I was scheduled for an iron infusion and was dreading it. Because I live with spinal muscular atrophy (SMA), maintaining my iron…
Discussion
Long-term treatment with Spinraza (nusinersen) was associated with early improvements in motor function followed by long-term stability in people with spinal muscular atrophy (SMA) types 2 and 3, according to a real-world study in Turkey. After an average follow-up of more than four years, 75% of patients with…
Discussion
It’s almost impossible for me to go places without silently analyzing the accessibility. I do it in my own city, but even more when we travel. After living with SMA for 29 years, it’s just natural to look around and quickly determine whether I can actually be a part…
Discussion
A few years ago, November was when writers worldwide would transform into hermits. We would hunker down and attempt to write 50,000 words by the end of the month — the equivalent of a novel. Rarely could we be seen during this time, except when fetching food and drink and…
Discussion
I often write about the caregivers who help me live a full and meaningful life with spinal muscular atrophy (SMA), and it is the primary theme of this column. Since I’ve lived most of my adult life away from home, I usually focus on the many wonderful friends in…
Discussion
Canada’s Drug Agency (CDA) recommends expanding public funding for Biogen’s Spinraza (nusinersen) to include adults and more patients with spinal muscular atrophy (SMA). Provincial governments have yet to decide on funding. Still in draft form, the recommendation is to include adults with SMA type 2 or…
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