Thanks to everyone who came out today to welcome the B4K team home after 500 miles. Pictures coming soon…
Bike for fun. Bike for Hope. Bike for all those afflicted with HIBM
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Bike for Kam / $28,012 Raised of $40,000 Goal
San Francisco to Santa Monica / May 12-19 / Seven Days, 500 Miles
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Welcome!
Welcome to our second annual Bike for Kam grassroots project! Follow our facebook page or Subscribe to receive all of our blog updates. Same as last year, Kam herself will be blogging sharing news, musings and the famous on the road daily posts. You don’t want to miss it! Watch our 2012 promo video below, pass around and donate! Every bit counts. There is no such thing as too little of a contribution. This is just the beginning, so keep coming back for more!
LIVING WITH HIBM
Bike for Kam is about more than Kam, it’s about a condition that affects lives on a daily basis. Meet other patients like Kam in our “Meet other HIBM Patients” menu. Kam wanted to share the lives of other HIBM patients like her. She did an informal interview on Dr. Daniel Darvish and Dr. Babak Darvish, founders of ARM and Bike for Kam’s beneficiary. The Darvish brothers are also HIBM patients. Watch this brief video as they share their personal feelings of what it is like to live with HIBM and the current progress on research. (See other patients at: Meet other HIBM Patients)
Bike for Kam Kickoff!
Follow our daily posts, May 12-19.
Donate and spread the word!
Michigan Supports Bike for Kam
Kam’s family and friends organized a fundraiser dinner at Ditty’s Bar in Clinton Twp. Michigan. Tonight, with the support from old friends and family, they raised over $1000 for Bike for Kam!
Michigan is Kam’s hometown and she sure is feeling the love from all the great support.
FINISH LINE Details – Saturday, May 19
FINISH LINE DETAILS
LA WEEKLY
Read LA Weekly’s coverage on Bike for Kam and HIBM.Click Here
LA WEEKLY STORY:
“The odds never stood in Kam Redlawsk’s favor.
Redlawsk, 34, is one in a million people affected by a genetic disorder that has wasted and weakened her muscles, to the point where she now uses a wheelchair….
And because the condition — hereditary inclusion body myopathy — is so rare, the chances that somebody will allocate research funds to developing a treatment can seem like a million to one. The government and Big Pharma have little incentive to produce drugs only a few in the world will use, only a few in the world will pay for.
What’s there to do when cold, hard statistics and industrial cost-benefit analysis are stacked against you? (more…)
University of Phoenix Alumnus Riding for HIBM
University of Phoenix wanted to show their Bike for Kam support so they sent out a note to their entire Southern California Campus. Andrew Gutierrez and Bobby Nelson, two University of Phoenix alumnus that will be riding 500 miles for HIBM, have been working hard to share the story of Bike for Kam and HIBM within their school. Read their letter here… (more…)
Did you know…
A rare disease is one that affects fewer than 200,000 Americans at any given time. HIBM is one of those rare disease.
Though the diseases, and many times the symptoms, are uncommon to most doctors, rare diseases – as a whole – represent a large medical challenge. Combine this with the lack of financial or market incentives to treat or cure the diseases, and you have a serious public health problem.
In 1983 the U. S. Congress enacted the Orphan Drug Act to provide incentives for medical pharmaceutical and product developers to focus on treatments for victims of rare diseases. Since that time, there have been over 18,000 products studies as possible treatments for rare diseases, and 326 of those have been approved by the FDA. Most of these were for diseases that had no approved treatment. Imagine the relief that came to those few patients.
Over the years rare diseases, with the help of NIH, NORD (National Organization for Rare Diseases), Global Genes Project, and the development of non profits championing their support for a rare disease, like ARM, have increased presence in the healthcare landscape and is working hard in giving rare diseases a voice and a chance at treatment development. More often than not, rare diseases have been labeled as easier and more likely to find treatment than diseases like aids or cancer. Support a rare disease. Support HIBM. Just because you are rare, does not mean you should not have a voice or a chance at treatment.
Thank you, Specialized!
Knowing that the CEO, Mike Sinyard, of Specialized Bicycles started from small beginnings and appreciates traditional methods of communication, Kam hand wrote a letter to Mike sharing ‘Bike for Kam’ project and asked if Specialized would be a part of our project. He replied with support by donating equipment, including new helmets, to the B4K team. Thanks to Mike and Specialized!
Illumination Entertainment Rocks!
“Only if someone like you cares a whole awful lot, nothing is going to get better…it’s not.” - The Lorax
Thanks to Illumination Entertainment, a film production company and the creative creators of Despicable Me and Dr Seuss’ The Lorax, for caring a whole lot and for their generous donation!
If you’re interested in sponsoring us with a donation, please contact us! 
We’d love to tell our fans how cool you are.
B4K START LINE Send-off
The guys will be departing from the Golden Gate Bridge for their 500 mile trek toward Santa Monica Pier on Saturday, May 12, 2012 @ 9am . COME and take a group photo with us at the Golden Gate Bridge!!!!!
Location: SOUTHEAST Golden Gate Bridge parking lot @ 9AM. There’s a parking lot RIGHT before the Golden Gate toll booth. In between Merchant Road and Lincoln Blvd (near Bike Route 95&202).
Add yourself and your San Franciscan friends to our B4K START LINE Facebook Event List. We would love to have you be a part of our group photo!
Right This Minute TV Interview
Check out Bike for Kam’s online TV interview and coverage by Right This Minute. WATCH HERE
To view TV stations where our RTM interview may have been aired at: CLICK HERE
Shipping the Bikes-15 Days and Counting
A couple of the guys have just departed LA to transport 9 of the 13 bikes that will be participating in the BikeforKam Coastal Tour. 15 Days to go and so far we have raised $6,420 of our 40k goal. Thanks to everyone who has donated so far. Keep sharing!
B4K Prepping for the Big Day. 18 Days and Counting…
18 days and counting…the ride is drawing near. One of the riders, Mikey, is transporting all the bikes up to San Francisco this weekend. This way their bikes are all packed and ready to go when they fly into San Francisco on Friday, May 11 and ready for Golden Gate departure on Saturday, May 12. The guys have been prepping their bikes all week, tuning, fitting and texting me pictures of things they’ve brought, modifications they’re performing on their rides. They also text me when they are our training and have been doing alot of riding both day and night.
Meet some of the B4K bike riders
Read some of the bios and stories of those involved with Bike for Kam. Click Here
Thank you to our recent Sponsors
We recently received two sponsorships and wanted to give a shout out.
LuminAID, the world’s first inflatable solar charged lights, sent us a shipment of their portable lights for our riders. They loved what we are doing and they themselves have an amazing purpose.
Thanks to Superbot Entertainment for their generous donation. Superbot is a new videogame studio located in Culver City, Ca, and an exclusive developer for Sony Computer Entertainment America.
If you’re interested in sponsoring us with a donation, please contact us! We’d love to tell our fans how cool you are.
Download our print ready posters
We want to make it easy for you to share about our project so please download our print ready 11×17 posters and think about posting them around town. Post them at your workplace, school, college, streets, church, local bike shop, on your baby…hmmm, maybe not on your baby, but you get the idea. Ask the local businesses (restaurants, hardware store, record store…) you patron if they mind you hanging up our flyers. We bet you they won’t mind at all.
Click and download the poster pdf of your choice.: http://bikeforkam.com/download-our-poster/
B4K at CicLAvia Spreading the word
This Past weekend a few of us from Bike for Kam hit the streets, in the appropriate sense, to promote our upcoming tour in 25 days. Our first effort was at CicLAvia, a downtown LA biking event with thousands of enthusiasts. I believe this is pretty new to the city of Los Angeles, but from what I hear the locals are in love with it. In a traffic heavy and congested city filled with smog and concrete, it probably gives the locals a chance to feel some freedom on their bikes without the fear of being run off the road.
Hello from Kam
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. (more…)
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