Hitting the Road for This Year’s Cure SMA Conference

For the first time in three years, I’m on the road again.

By the time you read this, I’ll be a day out from Anaheim, California. This isn’t the first time my parents and I have made this trip — in 2019, we spent two weeks road-tripping across the U.S., all to attend the annual Cure SMA conference. But this is our first big outing “post”-pandemic.

(Know that I’m intentional about my use of quotation marks. The pandemic isn’t over. The U.S. is experiencing a surge in cases, possibly due to the relaxed safety guidelines. If you’re planning on traveling this summer, please remember that many immunocompromised folks don’t have the luxury of pretending the pandemic is over. We’re still taking precautions. It’s my hope that you will as well.)

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I’ve been dreaming about this trip for months, ever since Cure SMA confirmed that this year’s conference is, in fact, happening. But I’ve also kept my expectations low. Our trip to Orlando, Florida, for the 2020 conference was canceled due to the pandemic. I was prepared for my hopes to be dashed, as they have been countless times over the past couple years.

But it seems my caution was for naught. Our hotel rooms are booked. Our suitcases are packed, our schedules are finalized, and everything appears to be a go.

I couldn’t be more excited.

Some SMA patients are comfortable with flying. I’m not. Which leaves us with the dreaded road trip, spread out over several days to keep us from losing our minds. Our itinerary is packed with stops along the way — everything from day trips to scenic Southwestern drives.

And then there’s the conference itself. Four days at a Disneyland hotel, culminating in a night at the parks. (We all know I’m making a beeline for Star Wars land.) In terms of vacations, it’s different from what we’re used to. But that’s what makes it exciting.

Three years without traveling means that we’re more than a little rusty. I’ve recently developed a tendency for carsickness, which will make the scenic drives a little harrowing. Once upon a time, my mom was ace at packing, somehow stuffing everything we’d need into a couple of medium-sized suitcases. But the pandemic has made us soft, which is to say we need to stretch our travel muscles.

Isn’t that why we travel, though? To step outside our comfort zones? To experience something exhilaratingly new?

There will be moments of discomfort and periods of stress. But my eye is on the prize: four days at Disney and, of course, Star Wars land.

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I’m on a panel at the conference this year, along with fellow columnist and nerd Kevin Schaefer! Join us on Saturday, June 18, from 1:15 to 2:45 p.m. PT for “How to Build Your Presence and Advocate Through Writing & Social Media.” We’ll be chatting with Allie Williams, Shane Burcaw, and Kevan Chandler about social media and building an online presence. The time is subject to change, but I’ll post any updates on my social media!

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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.