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  • Waste of Marketing Resources

    Posted by deann-r on January 7, 2020 at 11:00 am

    Have any of you received the “My SMA Story” journal from Biogen? Rumblings about it are on social media and sure enough mine arrived in the mail yesterday. In my opinion their SMA marketing team completely missed the mark on this one. First of all it’s so heavy I can’t even lift it. Not only that, many of us with SMA have difficulty writing. Furthermore the “Direction Memorandum” that came with it is odd. Not only does it try to point out how useful it is (even though it’s not), there are numerous times it points out that it’s unbranded. Basically they’re trying to distance it from Spinraza. Therefore I didn’t post this in the Spinraza forum. Maybe if the pages were blank I could at least redecorate it and use it for something else. However, mine is most likely going to the recycle bin as I suspect many others will as well.

    If I could reach my head, this one would have me scratching it. What was their goal with sending this out? Who sat on a committee deciding this was how they wanted to spend their marketing budget? How did they come up with the design & layout? So many questions. Not to mention it’s a product I’m guessing only those of us receiving Spinraza get.

    What are your opinions? Do you think some families will find it useful? What could they have sent instead? I would have preferred a 2020 calendar myself. One with the dates filled in. Unlike the blank calendars scattered in the journal.

    alyssa-silva replied 4 years, 5 months ago 3 Members · 2 Replies
  • 2 Replies
  • halsey-blocher

    January 8, 2020 at 9:51 pm

    I haven’t heard about this yet. I’m guessing you’re right about it only going to people who receive Spinraza. What does it say it’s purpose is? Is it meant to be a way to document your Spinraza journey or is it just a regular journal? I can see your point about it maybe not being the best idea. Personally, I love journaling, but it is challenging for a lot of people with SMA. Like you said, weight can be a problem, and a lot of people have a hard time writing if they can even hold a pen at all. Maybe they figured Spinraza was working so well that it wouldn’t be a problem? It would be interesting to know the thought process behind it, and what it’s actually intended to be used for. Kudos to you for recycling instead throwing it in the garbage though! 😁

  • alyssa-silva

    January 8, 2020 at 10:41 pm

    To be completely honest, I didn’t even open mine. 😳

    Like many are saying, I’m unable to use it, so, unfortunately, it was a waste. I’m sure Biogen didn’t mean any harm towards the gesture, but yeah… this wasn’t executed properly. I’d love to know their motives as well.

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