Bike for Kam, it's a Wrap - One Final Thank you

August 30, 2016

With the end of summer approaching I thought I would write our final goodbye. Bike for Kam will always be a wonderful and unexpected memory. It has been an amazing journey and I thank you for being a part of it. Together in May 2016 we raised over $40,000 and altogether we have raised over $141,000 for HIBM medical research. All of that was grassroots and raised using only Facebook and social media. Not bad.

At the end of every 'Bike for Kam' ride it has been tradition for me to put together a compilation video of our time on the road, so here is our final one above. In previous years I used the videos and pictures my friends sent from the road but this year I was able to take the videos and pictures through my own eyes. I started doing these final videos so one, in years to come my friends have something to look back on and two, as someone who is disabled and often doesn't get to do the things she wants, I know the feeling of being left out. This project was about raising funds and awareness but I didn't want our donors to think that is where their involvement ended. Instead, I wanted to take you along with us through social media posting and videos of our trek. Including you was my small way of thanking you for your donation and support.

Bike for Kam started out as a spontaneous whim but became so much more. In 2011, I didn't know what would come of it and my friends weren't quite sure how to do a bike tour or how they would get home, but they did. And then we tried it again the next year and the next… some of the best times happen with no plan. What a great life lesson.

While I began Bike for Kam with a couple of friends most of our riders I had never met until they signed up to ride for me and now we'll always be friends. Maybe not the friends where we see each other all the time but the friends I'll appreciate and will remember for forever. We'll always have this memory of achievement together.

Bike for Kam has taught me so much. One of the major things it has taught me is it's not always the people you expect to step up. It's not always the family member or your closest friend, but perhaps it's the complete stranger or a very casual acquaintance who has watched you from afar on social media who becomes the most stunned by your story and as a result gives all they have. These surprises were enjoyable. If you're fundraising or need help, don't underestimate the power of strangers and acquaintances. Jason and I have often been blown away by the people who have generously donated, rode and/or supported despite barely knowing me. Perhaps my disease is much newer and thus more stunning to them which sparked a response. Perhaps because they're not used to it, it's that more unbearable to learn about. Perhaps learning that this condition will go until there is no function left is too horrible of a fate to accept...

It is difficult to understand urgency when you don't experience it, especially when it's a progressive condition. With a progressive and non-fatal condition it may seem like there is all the time in the world but really there isn't, at least not for the person living it. Time isn't on our side and suddenly one day everything that was feared comes true.

For me, I experience all the intricacies of a body that is slowly dying and I know what the ultimate finish line could look like. But despite that uncomfortable finish line there is always adventure out there and something new to learn about yourself and those around you and that is what I look forward to most.

While Bike for Kam has been wonderful I have spent a lot of years making HIBM the focus of my life in California and it's time for a break. Life is so short. It's cliche, but it's true. One minute you're here and the next you could be gone or some life altering circumstance could impose itself on you, completely unraveling any and all plans you thought you had. There is some beauty to this sentiment - the humility of painfully being forced to adapt and give up all your preconceived notions, but I wouldn't wish it on anyone.

I'll never forget riding in Bike for Kam this year. I had the best time and expect to do more things like this. In previous years after I wrapped wrap Bike for Kam I would experience some mild depression. After all the excitement, cheerleading and adrenaline of running such an intense project everyone moved on with their life, but I was still stuck... alone...with HIBM. The project was finished for everyone else but I was still living with the 24/7 reminder of what was to come. But for some reason this year after a tiring week on the road, I felt fulfilled and didn't experience the same post Bike for Kam blues. All the work was worth it because I also got something out of it, and that is all I really want and desire - is to get something from life.  

So thank you to Viet, Andres, Ben, Hieu, Mikey, Ted, Andres, Sean, Jimmy, Bobby, Berr, Nick B, Mike B, Romeo, Edward, Ben C., Sara, Markham, Wyatt, Simon, Julie, Mel, CP, Steve, Blake, Greg, Ben R., Cindy, Katie, Carol, Yeon, Jonathan, Julio and David S. for making time for the road. A very special thanks to my friend and design colleague, Stephen Panicara for making every single 'Bike for Kam' promotional video and pro-bono at that. I'll never forget your kindness. Thank you to Markham Nacion for building a rig that took me along on this final unforgettable adventure, you're amazing. Thank you to all those who donated and fundraised on my behalf, and last but not least thanks to my husband, Jason. Jason drove SAG this year and supported the team and me for the entire week, but more than that he is my biggest cheerleader and supports me every day with little complaint. He doesn't stop me from trying new things no matter how crazy they are, and he is most certainly the one there when no one else is. He witnesses all the worst moments of this journey as well as all the funny and hopeful ones, and I couldn't do any of it without him.

I hope our video and our project inspires people to take on their own little adventures, road trips and travel. And even to other patients or those who are disabled, I hope me doing this ride and the way I try to live life in general inspires you to get out there, even if it's physically or socially uncomfortable. I try to move about life with the philosophy of living your life despite it, continue to be you and beyond, don't let rules and boundaries get in the way and don't let fear run your life. And, don't ever accept the first answer you receive. At the beginning of this condition so many doctors told me I had no hope. They told me to give up and said I wouldn't be able to live life like everyone else and I proved them all wrong. I flew down PCH in a plastic tub, have skydived, traveled, paraglided, dived in Great Barrier Reef, was a columnist, am a designer and artist.... Always investigate and research what you're told and NEVER accept what is put in front of you.

If you would like to keep up with me, feel free to follow me at:

Five years of Bike for Kam "Start" lines above. To view all our pictures throughout the years visit: Facebook.com/bikeforkam

Kam's Riding - The Story of Our Rig

Hello! Welcome to our first blog post! This is Kam, all blog posts will be written by me :).

By now you have probably heard two things.

1. This is our final year of "Bike for Kam" :(

2. For the first time I will "biking" the 500 miles from San Francisco-to-Santa Monica.

How is this happening? I have some amazing people who hand built me a rig, that is how!

This will be Bike for Kam's 5th and final year of biking cross country for HIBM (aka, GNE Myopathy). We began as a tiny group in 2011. At the time I moved to San Francisco for work, away from the non profit advocacy work I was doing for ARM (our beneficiary) in LA. One day a friend posted an idea of doing an epic cross country coastal bike tour across California - for no reason other than it was a great challenge. I immediately messaged him and pitched the idea of using his trip as a vehicle to fundraise for my rare muscle condition. He was ecstatic of the thought of giving this adventure greater purpose and soon this seed of an idea rapidly morphed into what is Bike for Kam today.

Five years seems so long ago, and five year ago none of us know what we were doing, which was part of the excitement. I had never ran a charity project all by myself, let alone organized a full on cross country tour. I had never built my own website, fundraised via social media nor put together a promotional campaign. I didn't have experience with logistics planning but soon I was going to learn. I promised my friends I would take care of all the building and planning of the project and all they had to do was ride - it was a match made in heaven. From home I worked night and day putting an entire fundraising campaign together, we launched and had an extremely successful, and safe, first ride. It was incredible. 

I was so grateful to my friends, family and strangers who kindly donated to us that I wanted to give something back in return. I wanted them to feel like they were a part of the ride so for the 8 days my friends were on the road I live blogged their stories, adventures and pictures from my home computer. One of the most common phrases I heard from my friends in 2011, and every year after was, "I wish Kam was here with us. I wish Kam could see this". There is something beautiful about sharing and though in many ways I felt like I was there with them in every mile they pedaled, it most certainly was not the same as physically being there.

 

I consider myself spontaneous and an adventurist at heart and I credit some of this perspective to HIBM. I love trying new things like skydiving, parasailing and if I can be traveling or on a road trip to see the grand beauty of nature, then I'm all in. HIBM has pushed me to enjoy these snippets of adventure and new experiences as if it was the first and last time. In 2011 when I began Bike for Kam I was still walking and standing, today I can no longer walk or even stand and now my upper extremities (shoulders, arms, fingers, hands and neck) have begun to rapidly deteriorate. Life is indeed short, you have to enjoy every bit of it.

Sara & Markham

Sara & Markham

Fast forward to today and our final year of Bike for Kam. We tossed around the idea of building a rig that could be pulled for 500 miles but "how?", "who?" and…"how?". Who was going to take on such a big initiative and who was going to lead this effort? Fortunately, I had a friend step forward with a plan. My friend Markham came up with a plan and asked friends in manufacturing/fabrication industry if they would be interested in helping. Markham and I are actually both Industrial Designers and went to the same Art & Design college in Detroit, Michigan though we were in different programs and not close friends at the time. We knew of each other in college but it wasn't until we both independently moved to California and Bike for Kam that we would truly become friends. Unbeknownst to me Sara, Marham's then girlfriend, now wife, followed my blog and Bike for Kam for a couple years. In 2013 we took a break from cross country and began shorter LA to San Diego rides…where Sara and Markham happened to live. They both joined us in 2013 and have been Bike for Kam riders ever since. This will be there very first cross country tour. It's funny how lives intertwine and connect at different stages.

I'm extremely grateful to Markham's commitment in making this dream a reality. He has led the charge and rallied resources in San Diego to make it happen and I'll never be able to thank him enough. He has worked countless hours, nights and weekends to pull this all together. Markham isn't just a talented Industrial Designer but he can fabricate and manufacture just about anything so most all the parts on the rig are hand made from Markham's own garage. Because of him and all the rig contributors I will be "biking" 500 miles in 22 days with my friends! Though I have seen the length of California coast and Big Sur, seeing it at the speed of a bicycle will be an amazing and unforgettable experience. You miss a whole lot when you view the world from a car.

With that I would love to personally thank all those who were involved in building this rig! 

(click logos below to connect to their Facebook page)

Thanks to 3DYN, a full service fabrication and machine shop based in San Diego!

Thanks to Coastal Enterprises, a “innovator and leading manufacturer of urethane products used for dimensional signage, model making, marine applications and a variety of tooling applications.” based in Orange, CA!

Thanks to All Wheel Engineering, LLC, Manufacturers of the world famous Kartboy Short Shifters, Bushings, Endlinks and more!

Thanks to SD Wheel Works Bicycle Garage, a wonderful bike shop in San Diego, CA!

And last but not least, Thanks again to Markham and his friends David Gopp, TJ Harmon and Justin Schock for building me this sweet ride!!!

We have 22 days until we begin this adventure and currently at $14,955 of our 35K fundraising goal. If you can share and contribute, please do! All proceeds benefit HIBM medical research and development.