KoreAm Columnist’s Bike for Kam Raises Funds to Cure the Disabling HIBM Disease

KoreAm
May 14,2014
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Riding Through the Peaks and Valleys

Story and Illustration by KAM REDLAWSK

Imagine driving the 101 highway in the middle of desolate California farm country and seeing six young guys pedaling, one behind the other. They look tired, dirty and are carrying seven days worth of camping gear and equipment. Perhaps you would wonder what they were doing, where they came from, where they were going, or even have a strong desire to call their parents and tell them how unsafe it is to be biking alone in the middle of traffic.

Don’t worry. They’re with me.

In 2011, some of my friends and I began a grassroots fundraising campaign, Bike for Kam, as a means to heighten awareness about my disabling condition called HIBM among our local community. What began as an urgent response to my body’s further physical decline, combined with my defiant desire for adventure, has turned into four years of worthwhile memories, biking and raising funds via social media for HIBM medical research.

Bike for Kam’s first year began with an ambitious challenge of biking 500 miles from San Francisco to Santa Monica in seven days. My friends had no prior experience with bike touring, but bearing witness to my debilitating condition and loss of function, such as walking, pushed them through the arduous miles like a strong sailing wind. This was also my very first experience in steering an entire fundraising campaign by myself. With only a couple months to plan, I learned how to build a website, created a promotional video expressing our very personal story, drew up some T-shirt designs and got as organized as one can when they are about to send six friends off, alone on the road.

Though I could not physically do the ride with them, we kept in daily contact through phone calls, and they would text me pictures of the beautiful scenery along the way, making me feel like I was biking right next to them. My job was really behind the computer screen, rallying our supporters, organizing donations and updating our website and social media with daily blogging of their stories from the road.

It was an epic ride of uncertainty, requiring physical and mental strength, and we connected and collaborated through the experiences of doing the seemingly impossible. My friends would often text me on the days that were particularly physically and mentally difficult. They would confess that, even though it was only seven days of challenge, this ride gave them a glimpse of what I must go through every day. In 2011 we raised over $23,000 via Facebook.

With such success, we completed the same route in 2012, and in 2013 introduced a new shorter route from Los Angeles to San Diego. Since 2011, we have raised more than $75,000, and all of it has gone directly to HIBM medical research. We continue to champion HIBM this year. Today, the technology exists to treat HIBM, but it is the lack of funding and awareness that keeps me bound to a chair with muscles that continue to fail me. I have already lost my legs, and my arms, hands and fingers are next in line. The channel of emotions is as wide as the grandest canyon, full of many peaks and valleys. One’s world is turned upside down, and there are days when you’re not quite sure what world you’re in. But, every year when Bike for Kam rolls around, and the team shows up on the start line, it reminds me that there are people who care about me and other HIBM patients.

Consider joining and/or donating to our cause. Become a rider, become a cheerleader, become a donor, and help us by sharing our story with all your loved ones. For more information and to donate, visit www.bikeforkam.com, and check out the video below.

This article was published in the May 2014 issue of KoreAm. Subscribe today! To purchase a single issue copy of the May issue, click the “Buy Now” button below. (U.S. customers only. Expect delivery in 5-7 business days).