The need for SMA awareness.

Story from 2008 about the lack of awareness of SMA that led to compounded tragedy

Denver post story

To show how little is STILL broadly known about SMA: Nothing about ‘easily broken bones’ was mentioned in any of the literature we received about the disease, nor a word from our doctors. Another frustrating consequence of no neuro-muscular specialists in this city.

Categories: Uncategorized | 2 Comments

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2 thoughts on “The need for SMA awareness.

  1. Mandi

    I was just reading this earlier today, and thought of you. Such a sad story… I also read that they have a clinical trial starting up for SMA. I wish there was a way to participate in the efforts. Is there a walk for the cure, or anything similar?

  2. Nonnie

    It appears that Familes of SMA (FSMA) is the best organization to work with at this time. It is hard to believe that so little is known about this condition that affects so many.

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