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…
Discussion
Two interconnected themes — community and hope — dominated the conversations at a recent gathering of people living with neuromuscular diseases. Lily Sander, MDA National Ambassador, speaking at MDA Engage: Dallas. (Photo by Tara Haelle) Lily Sander, national ambassador for the Muscular Dystrophy Association (MDA), hit on those…
Discussion
When you encourage someone and give them positive reinforcement, it’s like giving them a priceless gift. It inspires people to do their best and makes them feel special. Through my experiences with SMA, I try to encourage others, which in turn encourages me. For example, when new nurses are…
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