Our riders are very passionate for Bike for Kam. It's not just another bike ride, it's something that affects their friend Kam, and through their experience with Kam they have empathy and understanding for what HIBM looks like for all those affected. Fundraising is not an easy task. Asking people for support and money is not fun but Kam's friends do their best to share their personal feelings about the condition in order to gain awareness. Here is an example of one such fundraising post. Since we fundraise almost entirely on social media it's the sharing of the stories that can impact a friend, family member or a stranger to become a "Bike for Kam" supporter.
Read this heartfelt Facebook fundraising post from Kam's friend and Bike for Kam veteran bike rider, Viet Nguyen. Viet has completed all 4 "Bike for Kam" rides and will be riding our 5th and final ride. He was also the source of inspiration for "Bike for Kam", an avid adventurist he planned to do the 500 mile trek back in 2011 just for fun. But when Kam approached him and asked if he would mind attaching her cause to it that is when this random adventure trip turned into "Bike for Kam". Take a couple minutes to read his words.
We will be leaving in a couple days..."subscribe" (blue box) to automatically receive all 8 days of our Bicycle Diaries where Kam will be blogging and sharing media from the trip.
"It's Saturday and I am sitting at work trying to get just one more thing done, I've been so busy with work that sometimes I forget there are things that are more important in life. I haven't been posting much about this, but a week from now I will begin a 500 mile bicycle journey from SF to LA to raise awareness and funds for HIBM research. My friend Kam is affected by HIBM. Hereditary Inclusion Body Myopathy is a very rare genetic muscle debilitating, and degenerative condition, a condition that can lead to a quadriplegic state.
I've known Kam for 6-7 years now and I first met her when she came on to work at Mattel. At the time I met her, Kam still had some mobility, she was able to walk around using canes and was able to drive a car, but over the years her condition has progressively gotten worse, her wheelchair is how she moves around today, her legs are too weak to support her and HIBM is slowly affecting her arms and upper body. Kam is an exceptionally talented designer and artist, and a lover of life, road trips and the outdoors. I have much in common with her, so it really hurts to see someone with these passions in life be sidelined by something they had no control over. Over the years of having Kam as a friend, she has taught me not to take anything for granted, and being in her condition, she has always been the biggest supporter of me doing all the stupid things I can, while I can. Kam's strength comes in her ability to push on and be strong when all odds are against her, she's one of the strongest willed people I know. Instead of just sitting and waiting for something to happen, she has thrown herself neck deep into spreading awareness and fundraising for herself and others affected by her same condition. She has become a poster child and inspiration for the campaign when all she really wants is to be like everyone else.
We started this ride as a grassroots movement, this will be the last year we are doing this, and to celebrate 5 years of raising funds and awareness we are taking Kam with us this time. We've built a special rig to tow her behind our bicycles so that she can experience the bike trip for herself.
There is a cure and a lot of positive research, so it isn't about finding the cure, but it is more about funding the cure. HIBM is such a rare disease that it is classified as an orphan disease, so in return it doesn't receive any government funding for research. If you can spare just a few minutes, I've linked a video below that explains what HIBM is and the efforts behind the research. The Doctors researching the cure are also themselves affected by the condition, so like Kam, they are extremely strong individuals who keep pushing forward no matter the odds, they just need your help with funding, any donation helps $1, $5, $10, $20, whatever you can spare is appreciated, no donation too small. I have a direct link to my donation page below and a goal of raising $2,000 dollars. I know there are a lot of different charities that we all would like to help, it doesn't have to be one or the other, we can all help a little bit for all of them. Sorry for the long post, but you made it this far and I love you for that, thanks friends!"
What is HIBM?
Short promo video: