Guest Post: Putting the Brakes on ALS – The Power of Community

By Kaisha Johnson and Cliff Whitlock, The ALS Association Golden West Chapter

More than 1,200 participants, volunteers, and members of the community came together for a family-friendly day of celebration, exercise, education, awareness, music, food, and family fun at The ALS Association Golden West Chapter’s 14th annual Napa Valley Ride to Defeat ALS and Walk on Saturday, September 22.

Together, these dedicated individuals raised more than $920,000 on event day toward a $1 million goal to fund the mission priorities of the Golden West Chapter in care services, advocacy, and research.

Held at the California Veterans Home in Yountville, the annual Fall event brings incredible energy and an outpouring of support for those affected by ALS in California and around the world. Many participants said it was the best ride they’ve attended.

There was an incredible outpouring of community support, including more than 140 volunteers who set up, checked in participants, served food and drinks, supported rest stops and the six bike routes, cheered on all of our incredible riders and walkers as they crossed the finish line, and so much more.

The Napa Valley Ride to Defeat ALS and Walk was one of the first rides created in the country dedicated in support of the ALS community. Started by an all-volunteer committee in 2004, it’s grown into a powerhouse annual event.

The ride has seen a continued increase in participants and fundraising every year since its inception and has built tremendous momentum in support of The ALS Association’s efforts to create a world without ALS. Over the past 14 years, the Napa Valley Ride to Defeat ALS event has raised more than $7.2 million.

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“Bike riding and community is a winning combination,” said Miles McConnell, committee co-chair for the Napa Valley Ride to Defeat ALS and Walk, who has been living with ALS since  2015. “What I personally have come to realize is that, while I’ve lost certain things due to my diagnosis, I’ve also gained things. For example, I now have a deeper appreciation of working toward a goal that is beyond yourself or your little family circle. Being a part of a group working to help all of us with ALS, and being exposed to so many incredible people that give so much of themselves, has really widened my perspective on life.”

Karen Walker, committee co-chair for the Ride and board member for the Golden West Chapter, said, “We’re all here because we want to end ALS. I’m personally here because my mom, Josephine, who fought ALS for four years and passed away at  59, spent her entire life taking care of other people. I’m also here because of people with ALS, like Matt Chaney, Ryan Farnsworth, Deanna Reed, Kay Thomas, and of course… Miles McConnell. I know that if we share with the public more about what this disease really is, along with the courage and grace and dignity of people fighting ALS, that’s how we crush it.”

“It is really empowering for my family to be here,” shared Katie Anderson, who rode 100 miles in memory of her dad, Hardy Jones. “My dad would always say throughout his whole life, ‘Today is a great day,’ even after his diagnosis. Even in all of the tough moments and all of the hard times, he found the good and the great in every moment of his days. Those words continue to inspire me now.”

Reverend Dr. Deana Reed, from Napa, said, “In 2014, our lives turned on its axis as my spouse, Jan, and I heard the words ‘Deana, you have ALS.’ Our days were at first filled with fear, questions, and tears as we moved toward the opening of a new chapter for us. In the four years that have followed, we have been grateful for the slow progression of the disease and the outpouring of support from all around our ever-widening circle of friends, family, colleagues, and acquaintances here in our beautiful Napa Valley. Their presence reminds me of the hope that surrounds life.”

She added, “Thank you for being here. You all act as a support group for people with ALS. That support equates to strength, and that strength is a critical ingredient in dealing with a life with ALS, both for the person with the disease and their loved ones. So I want to say a heartfelt ‘thank you’ for all that you may have done in the past, all that you’re doing today, and all that you may do in the future. It really means a lot to us.”

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