Dystrophic Epidermolysis Bullosa Research Association of America, Inc.'s Fundraiser:

TEAM DebRA - 2012 NYC MARATHON

Dystrophic Epidermolysis Bullosa Research Association of America, Inc.'s Photo
Dystrophic Epidermolysis Bullosa Research Association of America, Inc.'s Photo
Dystrophic Epidermolysis Bullosa Research Association of America, Inc.'s Photo
Dystrophic Epidermolysis Bullosa Research Association of America, Inc.'s Photo
Dystrophic Epidermolysis Bullosa Research Association of America, Inc.'s Photo
Dystrophic Epidermolysis Bullosa Research Association of America, Inc.'s Photo
Dystrophic Epidermolysis Bullosa Research Association of America, Inc.'s Photo
Dystrophic Epidermolysis Bullosa Research Association of America, Inc.'s Photo

THE STORY:

Run through all 5-boroughs of New York City in the world’s largest marathon - and make a difference raising money to support the Dystrophic Epidermolysis Bullosa Research Association (DebRA), the only national not for profit that supports the research for a cure and treatments for, while providing services and programs to those who suffer from, Epidermolysis Bullosa (EB).

EB is a devastating and sometimes fatal rare genetic condition that affects 1 out of every 50,000 live births.  Patients with EB have skin so fragile that any rubbing, friction or slight trauma can cause severe blistering and sores - inside and outside their bodies.

  • The cost of specialized bandages can exceed $10,000 per month
  • Of those born with EB in 2010, 21% are no longer with us
  • EB children may have as many as 6 surgical procedures a year just so they can swallow

There is NO cure and the only treatment is wound care, bandaging and pain management.

 

Some of DebRA’s Services & Programs include:

EB Nurse Educator, who manages more than 3,000 inquiries annually, provides medical expertise, referrals and directs patients to available resources.

• The Wound Care Clearinghouse that provides free medical supplies to patients.

• The Family Crisis Fund that offers financial assistance to families to help alleviate the hardship of unreimbursed medical costs.

Please visit www.debra.org & Like us on Facebook www.facebook.com/debraofamerica

Contact: events@debra.org

 

DebRA's mission is to alleviate the inherent daily stress of living with "the worst disease you've never heard of."

until there’s a cure…there’s DebRA

DONATE

To This Fundraiser

$1,413

MONEY RAISED
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  • MOM

    $50

  • Anonymous

    $26

  • Anonymous

    $200

  • Neil, Ang, Jordan & Rori

    $250

  • Roxanne

    $262

  • Cousin Jessie!

    $100

  • Gina

    $200

  • Michele, Vince, Ethan and Ashton

    $50

  • nonnie and GpaBill

    $100

  • Scott, Stefanie, Ryan and Tyler

    $50

  • The Bennetts

    $25

  • Jim, Yvette, Aidan, and Lauren

    $50

  • Sean

    $50

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11% Raised of $12,500 Goal

Fundraise for this Campaign

The Team: $1,413 TOTAL RAISED SO FAR

Fundraiser Title

Susan Haluzan

Amount Raised:

$1,038

 

40% Raised of $2,620 Goal

Fundraiser Title

Kevin Barney

Amount Raised:

$175

Fundraiser Title

Dystrophic Epidermolysis Bullosa Re...

Amount Raised:

$150

 

1% Raised of $12,500 Goal

Fundraiser Title

Lynette Argir

Amount Raised:

$50

Donor Comments

Sean

Sean

DONATION: $50

8 months ago

Jim, Yvette, Aidan, and Lauren

Jim, Yvette, Aidan, and Lauren

DONATION: $50

2 years ago

The Bennetts

The Bennetts

DONATION: $25

In loving memory of Shannon Porter 2 years ago

Scott, Stefanie, Ryan and Tyler

Scott, Stefanie, Ryan and Tyler

DONATION: $50

In memory of Shannon 2 years ago

nonnie and GpaBill

nonnie and GpaBill

DONATION: $100

In loving memory of Shannon Danielle Porter. We miss you! 2 years ago