B4KAM via Crowdrise
June 15, 2012
BENEFITING: ADVANCEMENT OF RESEARCH FOR MYOPATHIES
EVENT DATE: May 12, 2012
Bike for Kam is a grassroots project about a group of friends coming together to complete a coastal bike tour from San Francisco to Santa Monica on May 12 to May 19, 2012. The purpose of their journey is to raise funds and awareness for their friend Kam, and for all those afflicted with HIBM (Hereditary Inclusion Body Myopathy). Through this project they hope to raise awareness of HIBM, so that we may soon find a cure for this rare condition.
Kam was just twenty years old when she first noticed muscle weakness. After many doctors and wrong diagnosis’ Kam received a diagnosis of HIBM (Hereditary Inclusion Body Myopathy). HIBM is a very rare genetic muscle debilitating, and degenerative condition. It causes progressive muscle wasting and weakness that begins in young adulthood (usually 20-30) and can lead to a quadriplegic state within 10-15 years. 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 had to employ the use of a cane to walk, then leg braces, and today she has nearly progressed to a permanent wheelchair state. HIBM has claimed most of Kam’s ability to walk and has moved to her upper extremities.
The good news is the technology exists to someday soon cure HIBM and halt its progression. However, progress is slow because of a lack of funding and awareness of HIBM.
Tell all your friends and family about this grassroots project as the success will depend on how much our project is passed around.
For more information visit: www.BikeforKam.com
If you'd like to see what it's like to LIVE WITH HIBM, watch this short vide: http://www.youtube.com/watch?v=YvwTL3QclF4&feature=player_embedded
*international donations are accepted here.
All donations are tax deductible. After you donate you will receive an email receipt.