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Karen Thorsen's Fundraiser:

JGSF Disney Marathon Weekend

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Karen's Photo
 

owner profile imageKaren Thorsen via Crowdrise
September 19, 2012

My 10-year old friend, John Hudson Dilgen suffers from this terrible disorder, his story is at johnhudsondilgen.com. Find a cure. End EB.  See more
Karen Thorsen

THE STORY:

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

$1,640

MONEY RAISED
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  • Karen Thorsen

    $50

  • Daria & Pete Voss

    $50

  • Gerard and Terry Pollio

    $100

  • Mom and Dad

    $100

  • Lisa Centonza and Family

    $25

  • Wagner Family

    $25

  • Donna Jennings

    $50

  • Ron and Rosanne Duffy

    $50

  • Grandpa Ken Thorsen

    $40

  • Laura Zack

    $20

  • Val and Jerry

    $40

  • The Morisano Family

    $45

  • Edward and Terri Marian

    $20

  • Marie and Dennis Martino

    $20

  • Kathy Thorsen

    $55

  • Bob and Rita Matits

    $25

  • Staten Island Youth Soccer League

    $100

  • Vincenza and Joseph Amorelli

    $10

  • Antimo and Diane Carola

    $25

  • Ray, Barbara, Emily and Ryan Pollio!

    $50

  • Grandma Betty

    $100

  • Barbara Feldman

    $100

  • Lisa Gasser

    $20

  • Shari Nisenson

    $10

  • John and Sandy Ernst

    $25

  • Nancy Morris

    $25

  • STEVEN, ALLISON& KENNY THORSEN

    $420

  • The Fitzpatrick Family

    $40

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164% Raised of$1,000 Goal

Fundraise for this Campaign

The Team: $39,122 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

The Fitzpatrick Family

The Fitzpatrick Family

DONATION: $40

7 years ago

STEVEN, ALLISON& KENNY THORSEN

STEVEN, ALLISON& KENNY THORSEN

DONATION: $420

7 years ago

John and Sandy Ernst

John and Sandy Ernst

DONATION: $25

7 years ago

Nancy Morris

Nancy Morris

DONATION: $25

7 years ago

Shari Nisenson

Shari Nisenson

DONATION: $10

7 years ago

Lisa Gasser

Lisa Gasser

DONATION: $20

7 years ago

Barbara Feldman

Barbara Feldman

DONATION: $100

7 years ago

Grandma Betty

Grandma Betty

DONATION: $100

7 years ago

Ray, Barbara, Emily and Ryan Pollio!

Ray, Barbara, Emily and Ryan Pollio!

DONATION: $50

7 years ago

Antimo and Diane Carola

Antimo and Diane Carola

DONATION: $25

7 years ago