Sheila Darvish's Fundraiser:

Bike for Kam 2011 / San Francisco to LA

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THE STORY:

Andres / Viet / Kam / Steve +Team wrote -

 

For more information visit:  www.BikeforKam.com

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 (Los Angeles) on April 25 to April 29, 2011. 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 we 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’s 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 is currently moving to her upper extremities. 

In 2007 Kam found ARM (Advancement of Research Myopathies).  ARM is a non profit organization that is dedicated to fundraising and researching a treatment and ultimately cure of HIBM.  The doctors are brothers and patients themselves, and through their example KAM has been working with ARM and helping to fundraise since 2007.  Utilizing her design background, Kam also created ARM's current brand identity from the ground up.

The good news is the technology exists to someday soon cure HIBM and halt it’s progression. However, progress is slow because of a lack of funding and awareness of HIBM.  “Bike for Kam” is about friends embarking on a coastal bike journey in order to raise funds and awareness so that Kam and all patients will never have to experience full effects of this terrible disease.

Follow the “Bike for Kam” website and blog as they embark on their journey.  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

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MONEY RAISED
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The Team: $22,398 TOTAL RAISED SO FAR

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B4K

Amount Raised:

$22,198

 

111% Raised of $20,000 Goal

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Harmony Frederick

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$200

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andres garza

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Mindy Lee

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Sheila Darvish

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Marilyn Knak

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Sherina Randolph

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jason H

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