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  • David Mitchell became a registered member 2 months ago

    • Hey David, welcome! Thanks for joining our community here, and I hope you find it helpful. If you have any questions, feel free to reach out to DeAnn, Alyssa, or myself. Have a great day!

      • Thanks. I’ve actually been keeping track of the website for several years now just never formally registered. I’ve been waiting for Risdiplam to get FDA authorization but have been getting Spinraza dosings since late 2017. I write about people with Spinal Motor Atrophy in my third book, “The Biopolitics of Disability” (U of Michigan Press, 2016) particularly with respect to the integration of people with SMA experience on the website and how that shifted some of the emphasis and politics of SMA. I am a power wheelchair user and just watched several of the videos about getting a power wheelchair on this site. The contain some good information but do not discuss the complexity of getting approved for a power wheelchair or the complexity of navigating the health insurance system that throws up as many barriers as possible.

        • I think many of us are equally excited for risdiplam. Definitely an exciting time in the community. And glad you enjoyed our recent videos! Yeah, insurance hassles are certainly a whole other beast, and it’s something we discuss here frequently. We have a sub-forum devoted to assistive technology, which you can check out here. Feel free to post any questions about the process of acquiring a new chair there. Also I’ll check out your book!

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