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Mary Alice Venezio Sexton's Fundraiser:

Team JGSF Twilight Zone Tower of Terror 10-Miler Weekend

 

Mary Alice Venezio Sexton via Crowdrise
October 01, 2014

3 days...  See more

BENEFITING: EB Research Partnership

ORGANIZER: EB Research Partnership

EVENT DATE: Oct 04, 2014

Mary Alice Venezio Sexton

THE STORY:

http://www.myfoxny.com/clip/10609350/butterfly-children

Thee days from today, On October 4, I will be running the 2014 The Twilight Zone Tower of Terror™ 10-Miler to support the Jackson Gabriel Silver Foundation (JGSF).  You should know that I am not a marathon runner.  In fact, I only began running a few years ago and to date have only completed a few 5K's and one 5 miler that was a challenge!  Why commit to a 10-Miler?  I am running to support a boy, John Hudson Dilgen - a boy who was introduced to me by a friend.  I watched the video from The Doctor's and I could not sleep.  I want so much to help this boy and others with this disease.  When the 10-Miler became an option, I realized that maybe I could make a difference.  I am running to raise money to find a cure for Epidermolysis Bullosa ("EB") to help John Hudson Dilgen and all other children born and suffering with this disease.  Please click on the video or this link to learn more about John Hudson Dilgen and this disease. 

JGSF was 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 has raised over $2,000,000 for research and given grants to support the promising therapies being developed at Stanford University, the University of Minnesota and the University of Southern California.

Practically speaking, a child who suffers from EB lacks a critical protein that binds his or her layers of skin together. Imagine your skin being as fragile as a butterfly's wings. Imagine every movement you make causing your skin to shear off your body.

Curing a rare disease is always a race against the clock. But curing EB is a race against a clock moving at warp speed.  Children like Jackson have a 60% 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 shortened life.

There is tremendously encouraging work underway, and a cure for EB is within reach. The Jackson Gabriel Silver Foundation has already funded key research projects and is excited to collaborate with the brilliant scientists working on a cure for EB.  Go to www.jgsf.org to learn more.

Please consider making a donation to help me reach my fundraising goal of $500.  Every dollar brings us a step closer to finding a cure for this horrible disease.

~~Thank you so much for supporting me and the work that the JGSF is doing to find a cure for EB.

http://www.myfoxny.com/clip/10609350/butterfly-children

 

 

DONATE

To This Fundraiser

$480

MONEY RAISED
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  • Anonymous

    $20

  • Terry Dyer

    $25

  • Anonymous

    $50

  • Eva Marie Johnson

    $20

  • Jaclyn Frey

    $35

  • John, Dan and Kate Hogan

    $25

  • Patti Ceglio Johnson

    $30

  • Frank and Laura Venezio

    $50

  • Joellen and George Venturi

    $50

  • Brian Clay

    $25

  • Kathy Kuberiet

    $50

  • Anonymous

     

  • Anonymous

    $20

  • Scott & Cynthia Nestle

    $50

  • Mary Ellen

    $20

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96% Raised of $500 Goal

Fundraise for this Campaign

The Team: $20,521 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Liz Morano

Amount Raised

$8,055

 

269% Raised of $3,000 Goal

Fundraiser Title

Faye Dilgen

Amount Raised

$2,050

Fundraiser Title

Nick, Alex and Claudia Morano

Amount Raised

$2,018

 

101% Raised of $2,000 Goal

Fundraiser Title

TracyAnne Morelli

Amount Raised

$1,575

 

315% Raised of $500 Goal

Fundraiser Title

Erik Johnson

Amount Raised

$1,055

 

106% Raised of $1,000 Goal

Fundraiser Title

John Purpura

Amount Raised

$1,055

 

106% Raised of $1,000 Goal

Fundraiser Title

Brian McIntyre

Amount Raised

$1,000

 

100% Raised of $1,000 Goal

Fundraiser Title

Theresa Johnson

Amount Raised

$893

 

179% Raised of $500 Goal

Donor Comments

Mary Ellen

Mary Ellen

DONATION: $20

4 years ago

Scott & Cynthia Nestle

Scott & Cynthia Nestle

DONATION: $50

4 years ago

Anonymous

ANONYMOUS

DONATION: $20

4 years ago

Anonymous

ANONYMOUS

You go girl 4 years ago

Kathy Kuberiet

Kathy Kuberiet

DONATION: $50

Good luck Mar!! 4 years ago

Brian Clay

Brian Clay

DONATION: $25

4 years ago

Joellen and George Venturi

Joellen and George Venturi

DONATION: $50

4 years ago

Frank and Laura Venezio

Frank and Laura Venezio

DONATION: $50

4 years ago

Patti Ceglio Johnson

Patti Ceglio Johnson

DONATION: $30

Mary Alice, thank you for raising my awareness about this condition. Godspeed! 4 years ago

John, Dan and Kate Hogan

John, Dan and Kate Hogan

DONATION: $25

Go Aunt Mary Alice! We are proud of you for making a difference! 4 years ago