Therapy Developments, Gratitude, and Patience
Hey everyone, here’s my latest column:
I think it’s a really exciting time for all of us in the SMA community, and I wanted to write about my experiences with Spinraza in light of the recent news about the treatment zolgensma (previously called AVXS-101). Despite the fact that this treatment has been filed for FDA-approval, there are still people complaining about how much it costs, and how it will only be made available to infants with Type I SMA initially.
I understand these frustrations, but I also think it’s a time to celebrate how far we’ve come. With a new treatment on the horizon, more technologies out there to help people with disabilities live more independently, and other medical advancements, I think we all have something to be grateful for.
Let me know your thoughts on this column, and if you have any questions about zolgensma or anything else.