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  • “What Makes Me Rare SMA” Initiative: We Want to Hear From YOU!

    Posted by alyssa-silva on February 12, 2020 at 8:00 am

    What Makes Me Rare SMA

    On February 29th, SMA News Today will be celebrating Rare Disease Day— a day in which we honor and recognize all that makes us unique living with, well, a rare disease like SMA! This day was founded to bring more awareness, more acceptance, and more action to the rare disease community which is why we have decided to start this initiative.

    In doing so, we are asking for a simple favor: share your story with us.

    At SMA News Today, we are creating a video compilation of those living with SMA for the end of the month but also posting #WhatMakesMeRareSMA stories throughout February. That’s where we hope you’ll come in.

    Here’s how it works:

    1. Create a video— using any device, hit that record button and tell us who you are, where you’re from, your diagnosis, and how you celebrate what makes you rare. Tag us (@smanewstoday) and use the hashtag #WhatMakesMeRareSMA on social media to spread the word! Note: if you are interested in participating in the video compilation, please email your video to [email protected]. Use #WhatMakesMeRareSMA as the subject line.
    2. Written submissions— video not your thing? That’s cool, too! We are also accepting written submissions telling us who you are, where you’re from, your diagnosis, and how you celebrate what makes you rare. Again, tag us (@smanewstoday) and use the hashtag #WhatMakesMeRareSMA on social media to spread the word! Note: if you are interested in being featured on our social channels, please email a picture and your write-up to [email protected]. Use #WhatMakesMeRareSMA as the subject line.

    Just so you know… SMA may take away so much in our lives, but it can never rob us of the impact we create when we choose to share our story with the world. We hope you’ll join us.

    alyssa-silva replied 4 years ago 1 Member · 0 Replies
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