#DoPublicGood is a project highlighting people or organizations that do good by bike. Each month we’ll be shining a spotlight on those who enrich communities all over through their two-wheeled advocacy. You can read our past #DoPublicGood profiles here.
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Family riding the Napa Valley Ride to Defeat ALS
May is ALS Awareness Month, which gives us the opportunity to shine a light on an incredible event PUBLIC bikes has supported since 2013: The Napa Valley Ride to Defeat ALS.
The ride was founded in 2005 to support The ALS Association’s efforts to advance the search for effective treatments and cures for the disease. Since then, it has raised more than $6.1 million; becoming the largest ALS charity ride in the world.
We interviewed Cliff Whitlock, Team Challenge ALS Director, about the past, present, and future of an event that is helping so many people battle a devastating disease.
Can you start by telling us a little bit about ALS (Lou Gehrig’s Disease)?
CLIFF: Amyotrophic lateral sclerosis (ALS), commonly referred to as Lou Gehrig’s Disease, and more recently known from the Ice Bucket Challenge in 2014, is a fatal, neurodegenerative illness that affects nerve cells in the brain and spinal cord. Within an average of 2-5 years, people with ALS lose the ability to walk, move, speak, swallow, and eventually, to breathe – all while the mind and senses usually continue to function normally.
ALS is not contagious and does not discriminate – it affects men and women of all ages, ethnic backgrounds, and socioeconomic status around the world. There is no known cause and no way to substantially slow the disease.
Every 90 minutes, someone is diagnosed with ALS. Every 90 minutes, someone loses their battle.
How did the ride come about as a way to help fight the disease?
CLIFF: The ALS Association already had walks to help raise funds and awareness for the disease, but our volunteers wanted to broaden that outreach to a ride. Coming together with a small group of dedicated business leaders and cyclists, they created the first Wine Country Ride to Defeat ALS, now known as the Napa Valley Ride.
While growing rapidly from a few hundred participants to more than one thousand in 14 years, the event has kept its family-friendly environment and mission-oriented sense of purpose. All of our attendees are able to have fun and celebrate the lives of people with ALS while working hard to raise funds for care services, public policy, and research to end the disease.
Driving awareness is another big aspect of the ride that helps us fight the disease. The more people who participate and donate, the more funding and volunteers we get – which is huge. Every person makes a difference in our organization.
The Napa Valley Ride to Defeat ALS has become the largest charity ride for ALS in the world. Last year, we had 1,150 total participants who raised $960,000; advancing The ALS Association’s search for effective treatments and cures for the disease.
Team (S)miles at the starting line.
Tell us more about the event and what the full experience is like.
CLIFF: It truly is one of the most beautiful rides in the world, and right during harvest season so the aromas and sites are in peak form. We’re proud to have a route for any level of rider: 12 miles, 28 miles, 38 miles (new route), 62 mile Lite, 62 mile Challenge, or 100 miles. Each distance offers a beautiful day riding past vineyards, with rest stops every 10-20 miles and SAG (support and gear) vehicles to help along the way.
The ride ends with an incredible festival with live music from Santa Rosa’s own Kingsborough Band, a well deserved beer or glass of wine, delicious BBQ, ice cream, smoothie bikes, etc…
Many participants form a team of friends and family or a group of coworkers, or even sign up to ride on their own and make friends on the route! We ask all of our participants to pay a registration fee and raise a minimum of $150 before the day of the ride. These funds are put to use right away for critical research and care services for people living with ALS and their families. Plus, you’ll earn a Napa Valley Ride beer or wine glass and a pair of branded socks!
In addition to this there are other levels of fundraising incentives which include a really wonderful jersey when you raise $750 or more, and bike shorts when you raise more than $3,000!
Overall, it’s a rejoiceful day of exercise, food, wine, and community.
What are some stories from the ride that stand out to you?
CLIFF: One story happened just last year. Matt Chaney, who has lived with ALS for more than 17 years, gifted his recumbent bike to another person recently diagnosed with ALS in hopes that he would get to enjoy it as much as he had when he was still able to ride. This is just one example of how dedicated Matt is to the ALS community and he has said to me that he feels lucky to have lived so long and so well with ALS. Matt continues to be an inspiration for so many living with the disease that you can live a productive and meaningful life. He has been the Co-Chair for the Napa Valley Ride for several years and continues to lead the event as a top fundraiser every year since he has been a part of it. His dedication and generosity really showed itself in 2017, when he gave his bike that he had ridden for more than a decade with ALS to another one of our riders who is living with the disease.
Matt Chaney with other members of the ride committee.
Another story that comes to mind has been happening for nearly every year of the Napa Valley Ride to Defeat ALS, all of our riders have been greeted at the Finish Line by the incredible team Kay’s Angels. This team spends the majority of the day with Kay Thomas, who has been living with ALS for more than 17 years, at the finish line cheering people as the end their incredible ride and give them celebration beads. Knowing that you have ridden many miles to be greeted by someone living with the disease adds a beautiful sense of purpose to our event. For many of us, Kay represents our “Never Give Up” spirit that we have on the back of all of our jerseys. Kay and her husband Phil Thomas are as dedicated today as they ever were in their efforts to create a world without ALS.
What is the future of the rides? What do you hope is next?
CLIFF: The future is that we create a world without ALS. Ultimately, to turn this ride into a celebration of the lives of people we have lost to ALS and the lives we hope to save. In order to do that though, we need to continue to grow as an event, include more people in our efforts, and raise more so we can do more.
I see events like the AIDS/LifeCycle and Bike MS as examples of peer to peer events that can power change. Sure, a large donor or corporation could come in and donate a million dollars to our organization and have a transformational impact, but when we have more than 1,000 participants riding together and more than 7,000 donors supporting them, that fires us all up at a grassroots level. To me, it’s a sign that people really care, and that they are willing to make the world a better place for those that are suffering at the hands of a devastating disease.
Because of those cycling events that I mentioned and many other fundraising events, there have been significant advancements and even treatments for AIDS and Multiple Sclerosis. My hope is that within the next few years, hopefully sooner, we will see more breakthroughs as a direct result of our efforts through the Ride. We’re seeing more genes discovered related to ALS than ever before. In fact, there was a new one just discovered last month (KIF5A). The ALS Association Golden West Chapter is now serving more people than ever in our chapter’s history, and the awareness has never been higher with the viral Ice Bucket Challenge and the recent diagnosis of celebrities like former 49er Hall of Famer Dwight Clark or the passing of Dr. Stephen Hawking and Sam Shepard.
All of these efforts, together, are culminating into real results and I am incredibly excited by the future. The people living with ALS and their families are the most inspiring people I have ever met. They show me, and all of us, that when the odds are stacked against you, you can either do nothing or do something. Our riders and supporters choose to do something.
Volunteers dressed as superheros.
How can people get involved in this year’s ride?
CLIFF: Sign up to ride or volunteer! We’re offering all our PUBLIC friends 20% off registration when they use discount code “DOGOOD”
Register at: www.NapaValleyRide.org
When: Saturday, September 22, 2018
Where: California Veterans Home in Yountville
Routes: 12-mi, 28-mi, 38-mi, 62-mi Lite, 62-mi Challenge, 100-mi, or Walk