The Cure SMA Conference Reminded Me of the Strength in Community

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by Kevin Schaefer |

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This year marked the second entirely virtual annual Cure SMA conference. Instead of armies of wheelchair users invading Disneyland and hotels, we fellowshipped through virtual trivia nights and Zoom socials. While I yearn to be back in person with my fellow SMA peeps, there’s still something magical about connecting with so many faces from around the world via computer screen. 

The conference came at just the right time for me. While I’ll elaborate on this in future columns, let’s just say that I’m about to enter a life-changing chapter that only a few people know about. Apologies to my readers for the incredibly vague description, but stay tuned for updates in the coming weeks. 

With this change comes uncertainty, doubt, and an odd mix of trepidation and excitement for what my future holds. It’s the kind of situation that only other people in the SMA and rare disease spaces can truly sympathize with, and that is why I need these relationships in my life. While I dearly cherish able-bodied friends who have incredible compassion and understanding, they also recognize that my connections with SMAers near and far are unique and essential in a different kind of way. 

Throughout the past year of virtual socials, we’ve discussed myriad topics ranging from treatment decisions to what we’re watching on Netflix. (If you’re not watching “Sweet Tooth” already, you should start.) We talk about our careers, relationships, and the infinite number of financial- and healthcare-related loopholes we all must navigate. 

It’s certainly comforting to take refuge among a community who shares my struggles. Yet, more often than not, it challenges me in ways I never imagined. Here I am, a seasoned veteran in the SMA community who regularly participates in panel discussions, facilitates virtual socials, and works for a company dedicated to serving rare disease communities. People in my community come to me for advice and tools, perhaps thinking I have all the answers when it comes to navigating life with a disability. 

Yeah, right. 

People can think whatever they want, but I have just as many struggles and anxieties as anyone else in my community. For example, I’m terrible with numbers, so the added complexity of understanding the financial hurdle nuances for people like me is well beyond my capabilities. And I have ideas for what I want to do in the future, but actually implementing that vision is intimidating. 

I’m making progress, which is in large part due to the support of my community friends. In regards to my financial status, I recently opened an Able account. This is a program designed to help people with disabilities save money without losing healthcare benefits, and was a featured topic of discussion at this year’s conference. It’s a step for me and helps me avoid spending all of my earnings at the comic shop around the corner. 

Additionally, I had the opportunity to reconnect with one of my college pastors, who now works as a financial advisor. I left our conversation feeling more motivated to set financial goals. For a long time, I was too reluctant to even think about this subject. With all the restrictions that accompany dependency on government healthcare services, I figured I was lucky just to have a job and some money in my bank account. 

Now, however, I’m reconsidering just how many possibilities I have. My friends in the SMA community continually push me to reach for the stars. This doesn’t apply only to economic wealth, but to personal growth as well. They encourage me to be the best I can be, and to pour that energy and love into others. 

Yes, I can’t wait for the day when thousands of us are back in Disneyland together, taking selfies next to the Millennium Falcon and hanging out at the hotel bar past midnight. Still, doing the conference virtually for the second time in a row didn’t stop us from connecting with each other. We’re strong, resilient. We roll through life together, no matter what. 

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

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