Skip to content
alexandrapinel's profile image - click for profile

Alexandra Pinel's Fundraiser:

JGSF Disney Marathon Weekend

Alexandra's Photo
Alexandra Pinel

THE STORY:

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

$625

MONEY RAISED
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  • Nico Carhart

    $30

  • Anonymous

    $50

  • Erica Frankel

    $15

  • Cousin Craig

     

  • Shannon O'Brien

    $10

  • Lisa Geismar

    $20

  • Bob, Lisa and Sally

    $50

  • Lauren Kreha

    $25

  • Yuriko Nabeta

    $25

  • Anonymous

    $150

  • Amy and Nico Pinel

     

  • Michele Moyle

    $100

  •  
  •  
  •  

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

Michele Moyle

Michele Moyle

DONATION: $100

6 years ago

Amy and Nico Pinel

Amy and Nico Pinel

6 years ago

Anonymous

ANONYMOUS

DONATION: $150

6 years ago

Yuriko Nabeta

Yuriko Nabeta

DONATION: $25

6 years ago

Lauren Kreha

Lauren Kreha

DONATION: $25

6 years ago

Bob, Lisa and Sally

Bob, Lisa and Sally

DONATION: $50

6 years ago

Lisa Geismar

Lisa Geismar

DONATION: $20

6 years ago

Shannon O'Brien

Shannon O'Brien

DONATION: $10

Allie, this is wonderful. I can't imagine having EB... it would completely disrupt my ability to dance. You are an all-star for taking this on. People like you make the world a better place! 6 years ago

Cousin Craig

Cousin Craig

Thanks for making the world a better place! 6 years ago

Erica Frankel

Erica Frankel

DONATION: $15

6 years ago