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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.

  • This topic has 1 reply, 2 voices, and was last updated 3 months, 1 week ago by DeAnn R.

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      • #20458
        Michael Morale
        Keymaster

        In this episode of the Morale Monologue, I’m sharing some information that was recently announced during the Cure SMA webinar, that was held on Wednesday, August 28, 2019. In this webinar, Cure SMA had representatives from AveXis Pharmaceuticals and the FDA. They discussed the most recent information regarding Zolgensma, along with information regarding the possibility of it becoming available to those of us that are adults.

        STRONG (NCT03381729) in SMA Type 2 children 6 months to 5 years

        REACH (NCT04042025) Possibly for adults up to 60 years

            * Est. Study Start Date:  09/01/2019

            * Est. Primary Completion Date:  12/31/2034

            * Est. Study Completion Date:  12/31/2034

        NOTE: The completion dates are for the conclusion of the REACH trial to end, but it may be available for SMA patients in 2022 or 2023

        For More Information:  http://www.clinicaltrials.gov

      • #20466
        DeAnn R
        Keymaster

        Interesting info!

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