Mesothelioma Applied Research Foundation

Farewell: 813 Words on Larry Davis & Mesothelioma Cancer

This week we say farewell to a friend. Larry Davis, father, husband, elite runner, activist, fundraiser and Mesothelioma cancer survivor is now at peace. His six-year struggle with this incurable disease, caused by exposure to asbestos fibers, ended on Monday morning, July 2nd, 2012. There has already been much written about Larry Davis. How could we not. Larry’s fight brought out the best in all of us who were fortunate to have crossed paths with him. We may have met him, heard about him or were moved by his web posts and interviews. Maybe we were impacted by his family, equally strong and active in the cause to ban asbestos and find a cure for the Mesothelioma cancer that has taken his life. Perhaps his efforts to explore reasonable, non-chemo/non-radiation treatment options got our attention. Or maybe it was simply his life-long passion for running and fitness that stoked our fire. As some of you know, I was lucky enough to team with Larry and his daughter Courtney back in 2010 on a special Standing Cyclist bicycle tour to raise awareness for the cause. I symbolically rode standing up without a saddle from Pittsburgh to Washington DC to encourage others to stand up against asbestos and to encourage donations to the Mesothelioma Applied Research Foundation on Larry’s behalf. Although ill and weakened, Larry ran beside me during those last miles as I rolled into DC. It was truly a pleasure and privilege to tribute Larry’s efforts and help raise awareness for an often misunderstood disease. In my travels, I was surprised at how many people had never heard of Mesothelioma or didn’t know that it’s caused by asbestos. Asbestos, a known health hazard for almost a century, has been woven into various products such as building materials, textiles, automotive brakes, adhesives and fire proofing. Many businesses who had manufactured asbestos products failed to educate their employees on the dangers of this known carcinogen. Asbestos exposure has been a common occurrence, in various industrial settings for generations in the USA and abroad. From pipe fitters to shipyard workers to construction laborers - most often, the portion of our population responsible for building our country from the ground up. This cancer hits hard and takes no prisoners. It's not if it will take your life, it’s simply a matter of when. Among the many victims, the notable include actor Steve McQueen, musician Warren Zevon, NFL player and actor Merlin Olsen and US Congressman Bruce Vento. Even more disturbing, spouses and young people can be exposed to these dangerous fibers while working in factories, transferred from clothing, or inhaled during simple home renovations. As the time bomb ticks on, sometimes over 10 to 50 years, the disease sits quiet and slowly spreads until that day you receive a seemingly hopeless prognosis. My own late father welded boilers in NYC for over 20 years. For all we know, he could have been exposed 40 years back…along with my mother and me… The saddest part of this story is that it could all have been avoided and still can be. There is still not a 100% ban on the manufacturing and use of asbestos in the United States and the rest of the world. Yes, you’re reading that correctly. This fight remained one of Larry’s greatest until the time of his death earlier this week. If Larry was here today, I believe he would continue to tell his story and the story of other Meso victims. He would ask you to contact your local and federal government representatives. He would ask you to raise funds for Meso education, family support services, non-chemo treatment options and for a cure. He would not want others to suffer as he and his family have. We live in “busy” times with big responsibilities and economic uncertainty. I know it’s easy for us to read this and say, it’s very sad and Larry was amazing, but I have so many other concerns. There’s no time and money for a cause I can’t directly connect with. Maybe poisoning ourselves is not enough of a concern. We could almost take that risk and push it out of our heads, but let’s remember that children exposed today may not experience symptoms of this disease for many decades down the road. Let’s consider how our decision to disengage today may adversely affect them, tomorrow. Larry Davis remains a personal hero of mine and continues to inspire me to engage and make a difference in whatever way that I can. Thank you Larry for your strength, your voice, and your willingness to step out on a limb and buck the system. A system that, for various reasons, has failed us in this area and inevitably cost you and many others their lives. Rest easy Larry. Now it’s our turn to stand up and continue to make a difference.

For more information on how you can stand up and take action, while honoring Larry’s efforts, please visit:


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The Inspiration Behind Cycling for a Cause

This past week I had the opportunity to go back and review an interview I did during my Pittsburgh to DC Standing Cyclist Mesothelioma Challenge Event in September of 2010. One section in particular stood out to me. At one point I stated that "we don't need to be afflicted with something to get involved and make a difference". I've since played that section over in my mind many times, to better understand exactly what I meant (I had just completed a 320 mi "seatless" bicycle tour on a single-speed, fixed-gear bike, for the cause and was a bit fried to say the least). I've revisited this subject with several supporters since and have decided to blog about this topic to add clarity and depth to my point. When it comes to supporting non-profit organizations, we tend to get involved because we ourselves or someone close to us has suffered from a related challenge. I believe this to be an important reason behind our actions and it should be encouraged whenever possible. But there are other, more subtle, reasons to get involved. I would like to encourage everyone, cyclists and non-cyclists alike, to consider the strangers you encounter on your life's journey and their challenges. Open your mind and hearts and consider how they inspire you. Imagine how you can get involved and make a difference in their lives, in your own unique way. Like the young person with a prosthetic leg you pass on the street. Perhaps you can get involved with CAF (the Challenged Athletes Foundation), a wonderful organization that helps physically challenged athletes pursue their passions. Consider the article you read about the visually impaired mountain bikers who stay on-track by reading the sounds reflecting off passing objects. You may be inspired to Google - blind mountain bikers - where you will discover the World Access for the Blind, an organization that hosts a special event called Mountain Biking with the Blind, that you can contribute to. You don't need to personally know a challenged individual or physically connect with a cause to "feel" something or to "do" something. Often, these random connections and amazing people I meet in passing are my greatest inspiration and fuel my adventures. Let's strive to open our eyes and see past our own lives. Then...get on your bike and ride! Make a positive difference in the world around you.

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The True Spirit of Standing Cyclist

Cyclists come in all shapes and sizes, and from all walks of life. Some of us shred, some meander, others camp. For true self-propelled fanatics, it doesn’t much matter which flavor is favored. In the end, we are all simply cyclists. Through the years, I’ve enjoyed labeling myself a downhill mountain biker, bikepacker, racer, adventure cyclist, roadie, bicycle tourist, and most recently…a Standing Cyclist. A riding style I sometimes catch heat for practicing. For those of you who do not know me personally, and do not follow my Standing Cyclist web site, this may sound a bit confusing. To set the record straight, let’s start with the basics. I had been riding since I was 9 and loved every form of the sport. I rode hard and frequently and I was bulletproof. I rode for the personal rush and reward of it. For me, it was a self-oriented activity. It was a rush, a freedom, and all about…me. Then, in my late thirties, I began to lag. My heart and lungs were working overtime, with not much to show for it. Then came my first attack and the brick wall behind it. I was soon diagnosed with Allergic Asthma and my wheels slowed to a halt. Many months, pounds and meds later, I was totally wrecked. A pathetic echo of my former self. After about two years of doctor appointments, “poor me” syndrome, and damaging side effects from powerful asthma meds, I hit bottom. On the bounce back up, I knew I had to do something special both mentally and physically. I turned to natural mind/body remedies and focused back on my true passion of cycling. It was always my best medicine. First, I tried to ride as I always had. In a seated, hunched over position. Between my weight gain and lung issues, I literally couldn’t breathe well enough to propel myself forward and still avoid an attack. As a seasoned product developer, I tapped my experience and intuition and began modifying my bike. Nothing helped until…I removed my seat and seatpost, and raised my handlebars. This opened up my diaphragm and allowed me to use gravity more to my advantage. A few miles led to ten miles which later led to overnights and eventually international bicycle tours. I just kept standing. Many pounds less, with a rock solid positive attitude, I became The Standing Cyclist. Somewhere along the way though I realized I was no longer the same cyclist, or person, I was before my diagnosis. I wasn’t enjoying the rush and attention I was receiving while out on the road, saddleless. I was changing. I found I was now riding more for the pure experience rather than for the achievement and bragging rights over beers and pizza. I no longer tracked my miles as carefully as I tracked my attitude, road relationships, lessons learned and the sharing of my asthma experiences with children and adults with similar challenges. I became more self-aware, grateful and like many other “bouncebacks” I decided to redirect my energy, from my own ego, to the needs of others. I began riding to raise awareness and funds for special causes such as Stand Up To Cancer and the Mesothelioma Applied Research Foundation. I founded to encourage other cyclists to train for, participate in, and even organize bicycle fundraising events. Now I could redirect the attention I was receiving, while training and touring in my standing position, to more important pursuits. I had found my new niche and I felt, and feel, better than ever. Through it all, I still admit, it’s all fueled primarily by my raw, child-like love of a bicycle. Any type of bicycle. The icing on the cake is doing what I love for causes that can benefit from how I do it, and that is the true spirit of Standing Cyclist. For me, it just doesn’t get any better than that. Peace.

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