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Sean Lee's Fundraiser:

Bike for Kam - Los Angeles to San Diego

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BENEFITING: ADVANCEMENT OF RESEARCH FOR MYOPATHIES

ORGANIZER: BikeForKam

EVENT DATE: Jun 01, 2013

Sean Lee

THE STORY:

B4K wrote -

Bike for Kam is a grassroots project founded by a group of friends who complete annual coastal bike tours to raise funds and awareness for their friend Kam, and for all those afflicted with HIBM (Hereditary Inclusion Body Myopathy); 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.  

Through this project they hope to raise awareness of HIBM, so that we may soon find a cure for this rare condition.

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 today she has nearly progressed to a permanent wheelchair state.  HIBM has claimed most of Kam’s ability to walk and has now 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.  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 Los Angeles to San Diego on June 1 to June 2, 2013.

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 :).

DONATE

To This Fundraiser

$1,120

MONEY RAISED
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  • Alice Lee

    $200

  • Jash Rosenbaum

    $500

  • Bill and Carol Powell

    $100

  • joshua yurtsever

    $50

  • Eric Borja

    $20

  • Ryan Kearns

    $50

  • roycifer

    $50

  • Eric & Degen

    $50

  • Anonymous

     

  • Michael Barry

    $50

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Fundraise for this Campaign

The Team: $17,250 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

BikeForKam Kam

Amount Raised

$10,415

 

26% Raised of$40,000 Goal

Fundraiser Title

Sara and Markham Nacion

Amount Raised

$1,150

 

115% Raised of$1,000 Goal

Fundraiser Title

Sean Lee

Amount Raised

$1,120

Fundraiser Title

Andrew Gutierrez

Amount Raised

$955

Fundraiser Title

Simon Ko

Amount Raised

$780

 

78% Raised of$1,000 Goal

Fundraiser Title

Viet Nguyen

Amount Raised

$575

 

58% Raised of$1,000 Goal

Fundraiser Title

Julie Chebbi

Amount Raised

$550

Fundraiser Title

Alexander Juarez

Amount Raised

$370

 

37% Raised of$1,000 Goal

Donor Comments

Michael Barry

Michael Barry

DONATION: $50

6 years ago

Anonymous

ANONYMOUS

6 years ago

Eric & Degen

Eric & Degen

DONATION: $50

6 years ago

roycifer

roycifer

DONATION: $50

6 years ago

Ryan Kearns

Ryan Kearns

DONATION: $50

6 years ago

Eric Borja

Eric Borja

DONATION: $20

6 years ago

joshua yurtsever

joshua yurtsever

DONATION: $50

6 years ago

Bill and Carol Powell

Bill and Carol Powell

DONATION: $100

6 years ago

Jash Rosenbaum

Jash Rosenbaum

DONATION: $500

6 years ago

Alice Lee

Alice Lee

DONATION: $200

6 years ago