Bike for Kam has snuck upon us and we can hardly believe a whole year has already passed. Still, even though it has been a year we have not forgotten the incredible amount of support we received from all of you back in 2011 and are sincerely looking forward to doing it all over again with you. The 23k you all helped us raise last year went directly to HIBM research.
Alot has changed in a year, including I (Kam) have gone into more permanent wheelchair use.
Inside my home I’m still shuffling around with my ultra cool granny walker, but outside I use a chair. If I had to be honest, going into a chair was really difficult…the most difficult stage of this whole HIBM saga thus far. I tried to hold on for as long as possible and to keep myself walking but the inevitable laid before my feet. There are situations that no matter how you try or how stubborn you are, the converging of points leave you with no choice. The ‘no choice’ aspect is the difficult part making ones head hang low with gracious acceptance. It was hard because I realized not even my own stubborness could keep me out of a chair. I didn’t quite make it before the wheelchair stage. I was slightly bummed. There is a time to gracefully accept and tailor oneself to an unchangeable situation, something all us HIBM patients have grown accustomed to.
But, there is good news. Last year sialic acid, a potential HIBM pill substrate, started in phase 1 human clinical trials. HIBM patients lack the producing of sialic acid. It’s hypothesized that this pill may be able to slow down the progression. This was first theorized by Bike for Kam’s beneficiary, ARM and HRG, and because of all their years of research work it was picked up by a venture capitalist as their first drug pipeline and was able to easily transition into human trial form. No one will know the effects until the trial phases are completed, but it’s a start. Sialic isn’t the only form of treatment in development. Gene therapy could be next and urgently trying to make it to human trial. One of the forms of gene therapy for HIBM is under development by Bike for Kam’s beneficiary, ARM, and their funded research lab; HRG. HRG is currently, the only research lab in the world working 100% of the time for HIBM (you can read more about them here). Gene therapy is known as a disruptive technology. The term is used to describe innovations that improve a product or service in ways that the market does not expect or cannot support because there is no clear business or profit outline. In short, a product or service designed for a new set of customers. Examples of past disruptive technologies are computers, the internet, cars, etc.
So, as always the bottleneck that slows down progress is lack of awareness, lack of funds and now potentially emerging with a disruptive technology. Something that could potentially be effective doesn’t know how to merge into a profit making market. It’s all about profit. Health is all about profit.
But, things are moving and it’s up to us to continue the momentum. These grassroot projects, like Bike for Kam, expand awareness and get the community involved. Given the barriers and plight of being rare, it may take longer, but I, we, believe that it can happen and it can happen even faster if everyone pitches in.
Other than that, I moved back to Los Angeles from San Francisco and rejoined my LA ‘Bike for Kam’ friends. The same guys who rode last year are committed again this year and to make things even better, our bike riding team has at least doubled from 2011. Though, we are a small team, doing everything out-of-pocket with no budget, Bike for Kam’s goal is to continously grow annually.
The day before we launched Bike for Kam 2012, I was up pretty late getting our website t0 go ‘live’ and suddenly the wave of familiarity came over me. Stephen was up late finishing our promo video, I was up late for days doing all the other pr materials and the euphoria from last year’s ride came back to visit. Because we have such a small team, it can be very tiring trying to do the job of ten different disciplines, but I remembered how happy we felt last year with the support of our friends and community. I remember how I felt while they were on the road and how much I wanted to be experiencing their experiences and how I would try to live through their adventures by the daily musings they offered me at the end of each long day. I’m proud of our little group. It feels like a rag-tag group, like the goonies on the road looking for treasure, not exactly doing things by the rules. At the same time we are a group of skilled professionals, a team of artists, designers, accountants, nurses, who built a project from the ground up. Everyone in the group has their own skill they lend to the group. I personally love seeing groups perform, bringing out the best and the best skills in each other. It’s rewarding. This is how we should always be. Periodically, we have brainstormed ideas on how to make it possible for me to be on the road with them, even if it’s joining them on the last stretch of their journey…who knows. Perhaps it could happen, in which case I would be blogging our adventures from the road ;). Who would I be Andy or Stef? Would I be kissing Mouth, Mikey or Brand? Decisions, decisions.
To receive all these personal updates, please, subscribe to our website and like our facebook page (www.facebook.com/bikeforkam). Expect more fun, new content, more live feeds and yes, the live blogging of their upcoming seven day, 500 mile on-the-road antics has returned. Thank you and please follow us telling all your friends, family and colleagues about us. If you have already donated but want to do more, it’s all about constantly sharing our project within your social circle. Maybe, put together your own little collecting donations group on behalf of Bike for Kam among your work, band, community, school, church…
With that, we are excited to share another month of promoting biking, living, fun and hope. Here’s to grabbing life and telling it what you want from it. Anything can happen and we are hoping it does.
Donate today and help us reach our 40k goal. 26 days until the teams flies to San Francisco to begin their journey!