Who Am I? Embracing My SMA Advocacy

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by Kevin Schaefer |

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I was at a friend’s wedding a few months ago when I pondered the question of how to properly introduce myself. Typically, I give the spiel that the company I work for is a network of rare disease websites, and my job involves overseeing online communities and writing and producing multimedia content. That blurb is indeed a mouthful, and it gets tiresome to repeat. So for the purposes of small interactions, I introduced myself as a writer and patient advocate.

Dating back to my childhood, I knew I wanted to write. As the son of two journalists and having grown up a theater kid, my proclivity toward storytelling is embedded in my DNA. Even before I knew how to write or became a passionate reader, I was making up stories with my vast collection of action figures and imagining scenarios in my head.

It’s the patient/disability advocate part that I never planned on pursuing. I was exposed to the spinal muscular atrophy (SMA) community from a young age, with my mom serving as the head of the North Carolina chapter of what was then called Families of SMA. There were also the occasional telethon interviews, which would no doubt make me cringe if I saw them today.

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I did my token appearances at conferences and fundraisers as a kid, but I was far away from accepting and understanding my disability identity, much less my advocacy. It wasn’t until five years ago that I embarked on a new path of advocacy both in and beyond the realm of SMA.

It started with speaking at a medical conference in Maryland in April 2017. This was just a few months after the U.S. Food and Drug Administration (FDA) approved Spinraza (nusinersen), the first SMA treatment. For whatever reason, Cure SMA asked me to participate in a formal panel with other members of the SMA community as we shared our stories with the FDA. I guess they thought I could pretend to be sophisticated for an hour.

About a month before this conference, I stumbled upon a site called SMA News Today. I had been looking for freelance writing opportunities since graduation, unsure if I would be able to acquire or maintain a more traditional job. While my specialty was writing movie reviews and entertainment features, I had dabbled with writing about my disability.

With a few columns about SMA for my student newspaper under my belt, I Googled “SMA bloggers.” Little did I know that a simple search would lead to a life-changing chapter in my life.

Enamored with the honesty and refined prose of Brianna Albers’ columns, I realized that there were platforms for people like me to tell our stories. Awkwardly, I reached out to her on Twitter, a site I have a love-hate relationship with. Yet if I hadn’t sent her that message, I might have never started my journey with SMA News Today and BioNews, its parent company.

Brie was kind enough to connect me with the editors at the time, and I gave birth to “Embracing My Inner Alien shortly after. I’m not a parent in the traditional sense, but I treat my creative endeavors like my kids.

From there, I delved into writing about my disability, spoke at the Maryland conference, broke my leg in the bathroom that night, spent two weeks in a hospital back home, and awaited the next adventure. Within a few months, I created the SMA News Today podcast and started working full time. I met many lifelong friends and learned the stories of countless individuals living with an array of rare diseases and disabilities. With each day, I continue to learn and grow in my writing and my advocacy.

Life rarely plays out the way you expect. It’s a series of pathways, surprises, and episodes that help us form our identities. While I didn’t plan on embracing this advocacy part of me, I now can’t imagine my life without it. It’s who I am.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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