BikeForKam Kam wrote -
THE STORY: Welcome to our FINAL year of Bike for Kam!
Bike for Kam is a grassroots project founded by a group of friends in 2011. 13 years ago our friend Kam began what would be a long journey of a very rare and incurable muscle disease called, HIBM (Hereditary Inclusion Body Myopathy); a very rare genetic muscle debilitating, and degenerative condition. It causes progressive muscle wasting and weakness and begins in young adulthood (usually 20-30) and can lead to a quadriplegic state within 10-15 years. Patients lose muscle strength until they can no longer walk, use their arms, hands or even hold up their head. It is extremely rare, therefore there is not a lot of money or interest to do research and fund a cure.
The good news is that through grassroot efforts the technology exists to treat/cure HIBM and halt its progression. One of the treatments is already being tested on humans, and a gene therapy technology that has been FDA greenlit for human clinical trials. The human clinical trials could start TODAY if we had the necessary funding.
Prior to HIBM, Kam was active and played soccer for nearly 12 years. However, because of the progression of HIBM Kam has had to employ the use of a cane to walk, then leg braces, and now confined to a wheelchair. Today, HIBM has begun to take use of her arms, shoulders, hands, neck and fingers...
To date, our small grassroots project has raised over 100k for HIBM research.
Tell ALL your friends and family about us as the success will depend on how much our project is passed around. There are many patients like Kam, and like her, they are all waiting for treatment to surface. This year Bike for Kam, Bike for HIBM is biking from San Francisco to Los Angeles on Friday, May 28th - Saturday, June 4, 2016
For more information visit: www.BikeforKam.com
*international donations are accepted here.
All donations are tax deductible. After you donate you will receive an email receipt :).