Welcome to the Launch of SMA My Way

I am officially a baby influencer.

I spent the morning tweaking my social media pages. I’ve been doing that a lot lately, ever since I graduated with a master’s degree and found myself with oodles of free time. But this was different. This was purposeful. This was in preparation for the launch of SMA My Way (SMW), a patient-focused community I’ve been working on, in collaboration with the biotech company Genentech.

It’s wild. I’ve been sitting on this news for over a year. Last June, I was in California with my parents, chatting with colleagues and eagerly awaiting a roundtable meeting with Genentech and the rest of the SMW folks, including Shane and Hannah of Squirmy and Grubs and Kevan Chandler of We Carry Kevan.

My impostor syndrome was, as they say, alive and well. These people are internet famous. I was, in comparison, so low on the totem pole that I felt like I shouldn’t be there.

But I was. Somehow, for some reason, I was.

I went into that roundtable discussion with no idea what to expect. We talked about the SMA community — what we felt was missing, and the kinds of resources we wanted to see. I ran my mouth about mental health, because I’m pretty sure that’s what I was put on this earth to do. Even my dad, who attended the meeting as well, put in his two cents.

We walked away from that strategic planning session with tentatively high hopes. Genentech was transparent about their intentions. They wanted to help the SMA community, but didn’t have the lived experience of someone with the disease, which is where we, the patient ambassadors, came in.

I still didn’t know why I was there. I’ve written previously about my limited connection with the community at large. Other than this column, I don’t do much in the way of disability advocacy. I am first and foremost a storyteller, with vague dreams of distributing mental health resources.

I don’t run a wildly popular blog. I’m terrible at keeping up with social media. Writing is an isolating endeavor. Sometimes, if your hard work pays off, you get to share your words with the world, but most of the time it’s staring at a computer screen and groaning loudly.

Last October, the SMW team met up in my neck of the woods. We discussed the future of SMW and paraded in front of a camera, all to take some professional headshots. I sat in front of a green screen, which is something I never thought I’d say. And then, at the very end of the session, the folks at Genentech said they’d be relying heavily on me for mental health content.

Just like that, a cartoon lightbulb appeared above my head.

The world is undergoing a significant change. Similarly, I am adapting to the chaos of post-graduate life. I always assumed that armed with my degree, I would transition directly to clinical work. The reality is, as always, far murkier — I don’t have a job, a career plan, or any sort of guarantee that my new book will go somewhere. I’m drifting. And now it seems I’ve tripped and stumbled my way into influencer life.

I’m not used to #sponsored posts or branded partnerships. It’s intimidating, seeing my face on the SMW website, promoting my work, and coming to terms with the fact that I’m an influencer now (or something similar to an influencer, like a distantly related third cousin of a small-time wellness blogger). Even writing this column, typing the word influencer, has me freaking out a little because it’s new and intimidating and not at all what I envisioned.

I just want to write. That’s all. Write and run my mouth about mental health.

But I believe in SMW, not because I’m a patient ambassador and am contractually obligated to talk this thing up, but because it is by and for the community. Real people with SMA have and will continue to drive the program. And most importantly, the mission is honorable: encouraging SMA patients to live their lives their way.

Everything I do, from writing to ranting about “Star Wars” to yelling about community access to mental health services, is grounded in the disability community. I believe deeply in our magic. Our power. Our ability to change the world. I would not be involved in SMW if I didn’t see it as a vehicle for progress and empowerment.

Check out my first collaboration with #SMAMyWay, which is to no one’s surprise all about mental health. And if you have any ideas for future collaborations, let me know in the comments below.

SMW is for you. What do you want to see?

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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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.