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Cynthia Rodriguez's Fundraiser:

JGSF Disney Marathon Weekend

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Cynthia's Photo
 

Cynthia Rodriguez via Crowdrise
September 23, 2012

Going to run my first 5K for my son, Oxlee, who has RDEB. I'm not a runner so this should be fun!! Let's do this!!  See more
Cynthia Rodriguez

THE STORY:

I am running my very first 5K for my son, Oxlee. As many of you know, I'm not a runner, I'm simply not designed to run. I will do this. I will train and I will finish. I ask for your support and prayers, they are both greatly needed and appreciated. 

As many of you are aware, EB is a rough and life-altering skin disorder and there currently is no cure. For those of you who may be unfamiiliar with Epidermolysis Bullosa, educate yourself.

I am running because I can. I am running because Oxlee can't.

 

JACKSON GABRIEL SILVER FOUNDATION INC wrote -

 

About the Jackson Gabriel Silver Foundation:

The Jackson Gabriel Silver Foundation is a nonprofit organization founded by Alex and Jamie Silver, whose son Jackson was born with Epidermolysis Bullosa ("EB"), a devastating, painful, disfiguring and currently incurable blistering disorder that affects children from birth. JGSF funds scientific research with the goal of treating and curing this devastating disease. To date, JGSF and affiliated funds have directly raised over $850,000 and have been instrumental in securing over $28 million for EB research. JGSF has given grants to support the promising therapies at leading institutions including Stanford University, the University of Minnesota, the University of Southern California and others. Please visit www.jgsf.org to learn more.

About Epidermolysis Bullosa (EB):

EB is a debilitating and devastating genetic disorder that affects a child from birth. EB is extremely rare - a child has 1 in 50,000 chance of being born with EB - and EB is not specific to any ethnicity or gender.

EB is technically defined as a group of diseases characterized by blister formation after minor trauma to the skin. Practically speaking, a child who suffers from EB lacks a critical protein that binds his or her layers of skin together. This protein acts as the “velcro” that attaches one layer of his or her skin to the other. Without this “velcro,” when this child moves, his or her skin slides apart, blisters and shears off leading to severe pain, disfigurement, and in too many cases, a premature death. A child with a severe form of EB can have a 60% cumulative risk of dying by age 15 and nearly a 100% chance of developing an aggressive, painful and fatal form of skin cancer over the course of his or her shortened life. 

DONATE

To This Fundraiser

$1,310

MONEY RAISED
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  • Anthony & Karena

    $100

  • Martha

    $25

  • Hillary & Jaelyn

    $25

  • Mike

    $25

  • Lisa Navarro-Thompson

    $25

  • Whiter

    $25

  • Cindy and Kevin Ahern

    $50

  • Liz & Iggy

    $25

  • Kate Ellison (Beckman)

    $25

  • Cecile Johnson

    $25

  • Steph Witman

    $25

  • The Perkkio Family

    $75

  • Roman

    $50

  • Lauren and Justin

    $50

  • THE POWELL FAMILY

    $25

  • Roseanna Giovinazzo

    $25

  • Cory, Theresa & Cara Dumez

    $25

  • Joshua Corey McBride

    $100

  • Bea Salas

    $25

  • Kim

    $25

  • Matt Titko

    $25

  • Veronica, Ian & Addilyn

    $35

  • Mystery B

    $250

  • The Eropkins

    $100

  • Mandy Giovinazzo-Minde

    $40

  • Nicole Giovinazzo

    $25

  • Jen, Brayden , Parker & Gavin

    $20

  • Tammie Chambers Lambeth

    $40

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262% Raised of $500 Goal

Fundraise for this Campaign

The Team: $39,097 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

marni larkin

Amount Raised

$3,500

Fundraiser Title

Ronnie Grossmann

Amount Raised

$2,900

Fundraiser Title

Jenni Ferro

Amount Raised

$2,552

 

102% Raised of $2,500 Goal

Fundraiser Title

Edward Grossmann

Amount Raised

$2,500

Fundraiser Title

Liz Morano

Amount Raised

$2,430

Fundraiser Title

Faye Dilgen

Amount Raised

$1,850

Fundraiser Title

Karen Thorsen

Amount Raised

$1,640

 

164% Raised of $1,000 Goal

Fundraiser Title

Karen Williams

Amount Raised

$1,540

Donor Comments

Tammie Chambers Lambeth

Tammie Chambers Lambeth

DONATION: $40

Oxlee is a wonderful kid. He touched my life and I think of him often! 6 years ago

Jen, Brayden , Parker & Gavin

Jen, Brayden , Parker & Gavin

DONATION: $20

6 years ago

Nicole Giovinazzo

Nicole Giovinazzo

DONATION: $25

6 years ago

Mandy Giovinazzo-Minde

Mandy Giovinazzo-Minde

DONATION: $40

Good Luck! Kick Butt! Love you... Xoxo 6 years ago

The Eropkins

The Eropkins

DONATION: $100

Run baby run!!! We love u!!! 6 years ago

Mystery B

Mystery B

DONATION: $250

6 years ago

Veronica, Ian & Addilyn

Veronica, Ian & Addilyn

DONATION: $35

6 years ago

Matt Titko

Matt Titko

DONATION: $25

6 years ago

Kim

Kim

DONATION: $25

6 years ago

Bea Salas

Bea Salas

DONATION: $25

6 years ago