How I Got to Participate in SMA My Way’s Real Talk Panel

Working with the biotech company Genentech never ceases to amaze me.

Back in 2019, when Genentech representatives first reached out to me about an upcoming initiative, I had no idea what to expect. They wanted me to attend a meeting, along with several other people in the SMA community, that would be taking place at the annual Cure SMA conference in Anaheim, California.

I was thrilled about the opportunity and surprised they’d chosen me to begin with. But I wasn’t about to look a gift horse in the mouth. In June 2019, my parents and I packed up our accessible van and drove halfway across the country in the name of career opportunities.

As part of the meeting, Genentech announced its upcoming initiative: SMA My Way (SMW) would be the first of its kind: a patient-led resource by and for the SMA community. As ambassadors, we would ensure the program was aligned with what the community truly needed.

I wasn’t just intrigued; I was excited. I was quite literally in the room where it happened, and as such, had the opportunity to do some real good.

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Adapting and producing

The past several years have been an exercise in expecting the unexpected. SMW launched at the end of 2019, only for us to watch in horror as COVID-19 swept the globe. Genentech adapted quickly, pivoting to virtual meetings that allowed us to remain connected throughout quarantine.

This year’s Cure SMA conference was important, as it signified a return to in-person programming. But it was also the first time Genentech and the SMW contributors had been in the same room since the fall of 2019. We were ecstatic, and not just because of everything the program had accomplished since its launch, such as the critical success of singer/songwriter James Ian’s song “Spaces.”

We were excited because we were going to film something special.

SMW’s Real Talk panels have covered everything from dating to living independently. While I’d participated in a panel in early 2022, I’d never gotten the opportunity to film something in person. I was unbelievably excited — and undeniably nervous. Luckily, the topic was something I could talk about for hours on end.

Disability representation is one of my passions. So when Genentech asked me if I wanted to speak about the importance of disability visibility, I said, “Hell yes.” I rehearsed my answers in the back of the van en route to California. But nothing could’ve prepared me for stepping on set for the first time.

There were people everywhere — makeup artists and sound specialists and whoever holds the little board that marks the beginning of a take. It felt so professional. A far cry from the lopsided ring light I have stashed somewhere in my bedroom. It was as though I’d fallen through a crack in the universe, slipping from the real world into something shiny and surreal, in which I powder my nose and drive cross-country for a business trip.

But the shiny and surreal was real. I sat next to my fellow SMW contributors under the bright, white lights and waited for the cameras to roll. When it was all said and done, I basked in the warm coastal sun, wondering at the wildness of life.

Now, months later, the panel is available to watch for free. If you watch it, let me know in the comments. I hope you enjoy!

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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.