Zolgensma (AVXS-101) News and Information

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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

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    • This forum contains 29 topics and 55 replies, and was last updated by  Alyssa Silva 5 days, 8 hours ago.

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    FDA Approves ZOLGENSMA for SMA! Talk about it now — click below:


     

    Video – Importance of Newborn Screening

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    Sponsored Post

    Planes, Trains, & Accessible Travel With SMA

    Talk to your doctor to determine if you or your child is fit to travel.

    Traveling with a child is never easy. Traveling with a child in a wheelchair is an extra challenge. The first time Leah flew on an airplane, she was six months old, almost a year before she was diagnosed. We have always been a traveling family and once she was diagnosed, we were both hopeful and determined that it wouldn’t hold us back.

    I have always flown with Leah by myself, just the two of us. Call me crazy; it’s OK, I am. There are some things we have learned that have made it so much easier for us.

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    Video – Be SMA Aware

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