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  • Do awareness months make an impact on the rare disease community?

    Posted by alyssa-silva on February 19, 2024 at 11:58 am

    In case you didn’t know, February is Rare Disease Month. Do you feel that awareness months impact the rare disease community? 

    I think they do, in part. But in my personal opinion, it’s more than just awareness that needs to take place. 

    Envisioning a better world with SMA, where do you think more work needs to be done? Is it awareness? Advocacy? Funding?

    mike-huddleston replied 1 month, 3 weeks ago 2 Members · 1 Reply
  • 1 Reply
  • mike-huddleston

    February 21, 2024 at 8:12 am

    I wish awareness months historically were not needed, but if you’re an able bodied, white, Christian, (most often) male, sometimes a reminder that the country and world has moved beyond every single thing being about you isn’t necessarily a bad thing. That said, like many things, these often seem to be “preaching to the choir” and not as helpful as we’d like. However, if they serve in some way as a reminder that people within a given community matter, then that’s a good thing. One of the reasons I enjoy volunteering within and mentoring for the disability community is to serve as an example that everyone is more than just their disability. It doesn’t define me; it’s part of who I am, but it’s not what I am. So often kids can’t see beyond their current situation and that they matter and that they can have a fulfilling life.

    However, to answer your question, let me say that if awareness months help with this, to me, no harm no foul. But advocacy, for self and for others without voice – or a forum to express it – seems to be the most important area of work that needs to be done.

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