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Lynette Argir's Fundraiser:

TEAM DebRA - 2012 NYC MARATHON

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Lynette Argir

THE STORY:

Dystrophic Epidermolysis Bullosa Research Association of America, Inc. wrote -

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

$50

MONEY RAISED
  • Sean

    $50

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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

4 years ago