Bike MS Stories: Changing the World One Dollar at a Time

By Tommi Johnstone
Bike MS co-captain, Team Amulet
6th year at Bike MS Oregon

Just a few weeks ago, I was asked to share my MS story at Bike MS. I thought that was kinda funny, because when I first heard of the weekend cycling event way back in 2010, I had no connection whatsoever to multiple sclerosis (MS). I sort of knew what MS was, but had never met anyone who lived with the disease. I just thought Bike MS sounded like a cool ride, and I liked the idea of camping overnight and experiencing a summer break with a new community. It never crossed my mind that I’d participate in Bike MS more than once.

That all changed the day I met Kevin Byrne.

We crossed paths at a World MS Day event in downtown Portland. Like I said, I had zero connection to the MS community, but when I heard you could get free registration to Bike MS if you participated in the World MS Day event – and I’m kind of a cheapskate – I had no choice. I had to attend.

People were busy spinning away on stationary bikes, side-by-side, determined to keep humming for 24 hours to raise awareness. I signed up for a 60-minute ride so I could get my free pass.

As I pedaled away with this group of tenacious strangers, the guy next to me and I launched into conversation. After making me laugh with a series of sailor-worthy jokes, he told me he was diagnosed with MS in 1999 and was the founder of a Bike MS team called “Amulet.” At the end of the hour his wife, Brie, showed up carrying their brand new baby daughter, Ellie.

I’d always grown up thinking I was gonna make a difference—thinking I would change the world. Because that’s what we think when we’re kids, right? That we have that kind of power.

Up to this point in my life, I had been waiting for an opportunity to come along. During all that waiting, I’d never really done anything; I had just wasted all that time. But on this particular day, the opportunity to change the world was just staring me in the face. I thought, Maybe I can change Ellie’s world. Maybe I can change Kevin and Brie’s world.

Kevin and Brie had no idea these thoughts were rolling around in my head, and yet they must’ve sensed it. Because right there, only knowing me a sliver in time, they asked me to join their Bike MS team.

Of course, my only answer could be “Yes!”

When I went to my very first Bike MS in 2010, I was overwhelmed by the level of community all around me, not to mention the awesome ride and activities. I’d never experienced anything like it. To be surrounded by other like-minded people who cared, who believed we all have the power to change the world — it was inspirational, it was addictive, and it was a large part of what drove me to return again, and again, and again, and again.

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Tommi cruising at Bike MS 2015

Someone asked me recently why I’m a Bike MS top fundraiser. After all, we don’t have to raise much to take advantage of all that Bike MS has to offer.

The truth is, we want to believe that money doesn’t rule the world. We want to believe that love conquers all. But the dirty truth is, no amount of love in the world is going to save Kevin’s life. No matter how much Brie, Ellie, me and everyone else who rides for Kevin – no matter how much we love him –­ it’s not going to remove MS from his body. No amount of caring or community support is going to ensure that Kevin will be there at Ellie’s graduation, or to walk her down the aisle on her wedding day.

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Kevin, Eleanor and Brie

The available treatments have stopped working for Kevin, so Kevin only has one chance: Dollars.

Dollars to fund research for more treatments and, ultimately, a cure. Only dollars will make a difference for Kevin.

That’s why I ride. That’s why I fundraise. That’s my MS story.

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Help Us Roll Faster Toward a Cure For Kevin and the Thousands of Others in Our Community Who Live with MS

Give Now

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A SPECIAL NOTE FROM TOMMI

If you’re a Bike MS fundraiser, Tommi encourages you to repurpose any and all parts of her story that will help you in your fundraising efforts. If you would like to know more of Tommi’s story, want to share fundraising tips and templates, or just want to buy her a bourbon, you can reach Tommi at: tommibike@gmail.com

Visit Amulet’s Bike MS team page

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