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BikeForKam Kam's Fundraiser:

2014 Bike for Kam - Los Angeles to San Diego

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B4KAM via Crowdrise
May 30, 2014

We just past 20K achieving 50% of our fundraising goal!! What a great way to begin! Tomorrow, we RIDE! Follow us on FB, IG & Twitter.  See more

BENEFITING: ADVANCEMENT OF RESEARCH FOR MYOPATHIES

EVENT DATE: May 31, 2014

BikeForKam Kam

THE STORY:

EVENT DATE: May 31 - June 1, 2014

THE STORY:

wwww.bikeforkam.com

Bike for Kam is a grassroots project founded by a group of friends, old and new, 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.  

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, 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 more difficult.

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 just 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 Los Angeles to San Diego on May 31 - June 1, 2014

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

$24,891

MONEY RAISED
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  • Dan & Alex Liota

    $25

  • The Beals

    $75

  • Jill Tuckman

    $50

  • Erin Steva

    $10

  • Nic

    $20

  • Jean

    $100

  • Don Lupo

    $50

  • Anonymous

    $500

  • Yoga Class

    $10

  • Dimitrios

    $50

  • Anonymous

    $10

  • Marcus Lee

    $50

  • Sharon, Brad & Jackson Mantel

    $50

  • Rodney Fuentebella

    $50

  • Barbara and Mel Weinzimer

    $50

  • Erin Rieber

    $25

  • Andrew Kaiser

    $15

  • Susan

    $150

  • Roel Punzalan

    $25

  • OMG Yoga

    $10

  • Esther Tseng

     

  • Esther Tseng

     

  • Mark Massey

    $100

  • olivia almalel

    $50

  • Tom Lehr

    $100

  • Dailey Advertising!

    $140

  • CP

    $50

  • Erin Sullivan

    $200

  • Stephen Panicara

    $25

  • Quang & Kim Bach

    $100

  • Logan miles

    $50

  • Michael Lee

    $10

  • Michael Lee

    $10

  • Frank Camberos

    $100

  • John and Heidi McMahon

    $100

  • Anonymous

     

  • Loy & Kim Pham

    $100

  • ted

    $250

  • Sunni Han

    $100

  • Corey & Yoori Mitchell

    $15

  • Anonymous

    $25

  • Maria

    $20

  • Usha

    $25

  • Anastasia Fransisca

    $40

  • PFChin

     

  • Reinier

    $50

  • Jack Johns

    $50

  • Michael Montalvo

    $150

  • Anonymous

    $100

  • Anna

     

  • Cat

    $25

  • brian

    $10

  • Steve & JJ Chang

    $200

  • Mom and Dad

    $100

  • Nikki

     

  • John and Lani Currado

    $50

  • DilDec

    $50

  • av

    $25

  • Anna Songco

    $100

  • Joey and Tracy

    $100

  • I guess you're a MexiCAN!

    $44

  • Mike

    $10

  • Mark

    $20

  • Joyce Riviere

    $207

  • Surya

    $21

  • Jeffrey Quintal

    $25

  • Patti Engel

    $100

  • Shoko & Sakae Morofushi

    $20

  • Arion Lapuz

    $10

  • Kristen

    $15

  • Maria Ortiz

    $25

  • Johan-Linda

    $25

  • Paulo Sellitti

    $10

  • Ilene Feng

    $50

  • Dave Kovisto

    $25

  • Kareem

     

  • Jack Ledwith

    $100

  • Natalie

    $25

  • Luz & Henry Altarejos

    $120

  • Anonymous

    $50

  • Lynne and Barry Scholer

    $100

  • Anonymous

    $20

  • Mike and Nadia Maddens

    $100

  • Maria s

    $200

  • Kathleen Tong

    $50

  • Anonymous

     

  • Kyle & Kendall

    $10

  • Pamela L Myers

    $50

  • Richard & Caroline Cook

    $50

  • Matthew & Robin Kaufman

    $100

  • Aaron, Keri, and Joey

    $50

  • Emily and Alex

    $20

  • Leo R.

    $30

  • Leo R.

    $20

  • Michele and David Rosenbaum

     

  • Irene Tjakrawinata

    $20

  • Chito Arellano

    $50

  • John Lim

     

  • Veryl Jefferson

    $25

  • Pax and Vivien

    $50

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62% Raised of $40,000 Goal

Fundraise for this Campaign

The Team: $24,891 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

BikeForKam Kam

Amount Raised

$12,708

 

32% Raised of $40,000 Goal

Fundraiser Title

Ben and Melissa

Amount Raised

$1,410

 

141% Raised of $1,000 Goal

Fundraiser Title

Sean Lee

Amount Raised

$1,250

 

125% Raised of $1,000 Goal

Fundraiser Title

Viet Nguyen

Amount Raised

$1,120

 

112% Raised of $1,000 Goal

Fundraiser Title

Katie Powell

Amount Raised

$1,075

 

108% Raised of $1,000 Goal

Fundraiser Title

Jonathan Bach

Amount Raised

$980

Fundraiser Title

Carol Powell

Amount Raised

$865

Fundraiser Title

Simon Ko

Amount Raised

$865

Donor Comments

Pax and Vivien

Pax and Vivien

DONATION: $50

Thanks for raising awareness Cindy, please have a safe ride 1 year ago

Veryl Jefferson

Veryl Jefferson

DONATION: $25

3 years ago

John Lim

John Lim

3 years ago

Chito Arellano

Chito Arellano

DONATION: $50

3 years ago

Irene Tjakrawinata

Irene Tjakrawinata

DONATION: $20

3 years ago

Michele and David Rosenbaum

Michele and David Rosenbaum

3 years ago

Leo R.

Leo R.

DONATION: $20

3 years ago

Leo R.

Leo R.

DONATION: $30

3 years ago

Emily and Alex

Emily and Alex

DONATION: $20

Nice one kids! London next year please 3 years ago

Aaron, Keri, and Joey

Aaron, Keri, and Joey

DONATION: $50

3 years ago