May 17, 2016
B4KAM 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. Together they founded Bike for Kam; an annual coastal bike tour to raise funds and awareness for HIBM research. To date, our small grassroots project has raised over 100k for HIBM research.
HIBM is classified as an orphan disease. According to US criteria, an orphan disease is one that affects fewer than 200,000 people, yet there are more than 5,000 such rare disorders worldwide. Because of its Orphan disease status, HIBM has not been “adopted” by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. In short, it's not profitable. Because of the rarity of HIBM, Kam was told she would never meet another patient and would never see treatment in her lifetime.
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...
Kam is a daughter, sister, wife, an artist, writer, designer, cook and patient advocate with a natural zest and curiosity for life. She does her best to not let HIBM take over her life but as the years pass and as HIBM progresses this quest becomes increasingly difficult. HIBM eventually takes all physical capacity and movement.
The good news is the technology exists to treat/cure HIBM and halt its progression. The nonprofit, ARM, that Kam works intimately with has developed a couple treatments; one a substrate therapy that is currently in clinical trials AND a gene therapy technology that has been FDA greenlit for human clinical trials in Southern California. The human clinical trials could start TODAY if we had the necessary funding.
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 :).