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Annie Langschultz's Fundraiser:

Annie's Team- Running for EB Awareness

Annie's Photo
Annie's Photo
Annie's Photo
Annie Langschultz

THE STORY:

Epidermolysis Bullosa (EB) — The Worst Disease You've Never Heard Of.™

And until this past winter when my beautiful neice Abbie was born with EB, I had never heard of it either.

To spread EB awareness and to raise money for DEBRA (The Dystrophic Epidermolysis Bullosa Research Association of America, which is the only national non-profit dedicated to funding research and providing services and programs for those with EB. You can see more at: http://www.debra.org) I have formed a team to run in the Gulf Beach Half Marathon. The race will take place on Saturday, Spetember 13 along the beautiful beaches of Milford, Connecticut.

Please consider joining my team (to register for the race, click here:  http://www.shorelinesharks.com/Events/Gulf_Beach_Half_Marathon.htm), donating to my fundraiser, or simply spreading the awarness of this horrible disease. Every little bit helps, and I thank you for taking the team to read about my fundraiser.

To learn more about EB, please read below...

Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, is often pervasive and debilitating, and is in some cases lethal before the age of 30. There is no treatment or cure. Daily wound care, pain management and protective bandaging are the only options available.
EB affects 1 out of every 20,000 live births and those born with it are often called Butterfly Children because as the analogy goes, their skin is as fragile as the wings of a butterfly. While many who live with the milder forms of EB can lead long and productive lives, the list of manifestations and secondary complications in the more severe forms is long and requires multiple interventions from a range of medical specialists. Those forms of EB result in disfigurement, disability and early death, in some cases in the first few months of life.

Did you know...
- EB affects 1 in 20,000 births.
It occurs in every racial/ethnic group and
affects both genders equally.


- EB kids may have as many as
6 surgeries a year just
to be able to swallow liquids.

- Of the babies born with EB in
2009, 32% are no longer with us. Of the
babies born with EB in 2012, 16% have
succumbed. Over a 5 year study, 73% of those
born with Junctional EB have lost their battle.


- In 2012, debra shipped more
than 200 boxes of supplies, valued at over
$300,000, to families who needed specialized
dressings and wound care products.


- The specialized bandages required
by EB patients can cost over $10,000 per
month. Many insurance companies do
not cover the full cost of bandages.


- There is no treatment or cure.
Daily wound care, pain management and
protective bandaging are the only options
available.

 

DONATE

To This Fundraiser

$13,665

MONEY RAISED
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  • The Dacey's | Meg, Craig, Brewer & Millie

    $100

  • Stephanie H. Silver

    $100

  • Anonymous

    $20

  • James & Kathleen Langschultz

    $150

  • Noeleen McGovern

    $50

  • Judy Cavino

     

  • Anonymous

    $250

  • Anonymous

     

  • Anonymous

     

  • Ram Wertheim

    $200

  • Anonymous

     

  • Liz Keese-Blasius

    $300

  • Anthony McKiernan

     

  • Bill Fallon

     

  • Gail Zubradt

     

  • Connie Accordino

     

  • Doc & Barbara Koenemund

    $250

  • Kelly Phillips

    $100

  • Kelly

    $20

  • Precision Billing & Consulting Services, LLC

    $1,000

  • Christopher and Dina Jones

    $100

  • Debbie

    $100

  • Linda Aponte

    $100

  • Anthony Vassallo

    $200

  • Dr. M. Robinson

    $100

  • Ralph & Cynthia Calderon

    $100

  • The Theis Family

    $25

  • Stacey Rossley Staples

     

  • Specialty Medical Services

    $500

  • Lynn and Joseph Langschultz

    $150

  • Dr. Mike Cocilovo

    $100

  • The Foreys

     

  • Mike Sapienza

    $100

  • Alan and Elaine McCabe

    $50

  • Keri & Scott Bruder

    $200

  • Carol Kray

    $100

  • Allison D'Ottavio

    $25

  • Natural Healthcare Center

    $100

  • Fred & Shari Seybolt

    $100

  • Dr Peter Ferraro

    $500

  • Todd & Ana Rossig

    $50

  • Jill, Billy, Ryan and Tucker

    $50

  • Jason Santarcangelo

    $100

  • Kevin & Caryn Oates

    $100

  • Solomon Page Group

    $200

  • Dr. Todd Koppel

    $250

  • CureMD

    $1,000

  • Northeast Spine & Wellness Center

    $150

  • Ed and Marie Langschultz

    $100

  • Erin & Mike Franzese

    $100

  • Marissa Marchesr

    $25

  • Baroan Technologies

    $100

  • Mike Langschultz

    $150

  • George and Janet

    $100

  • Bernadette Ritter

    $25

  • Connell

     

  • Indeira Dindial

    $100

  • Jr. & Catherine

    $100

  • Rosalie & Ken

     

  • Anonymous

    $25

  • Pete & Laura Greco

    $100

  • Kathy Sesko

     

  • The Parks

     

  • The Leitz Family

     

  • The redenbaughs

    $100

  • Anonymous

    $25

  • Pamela O.

    $25

  • Marcia and Ron Elliott

    $50

  • Dr. Dom

    $50

  • Kelly Greco Langschultz

    $50

  • Joseph Massood, Esq.

    $200

  • Tom and Lauren Gianni

    $40

  • Buttaci & Leardi, LLC

    $500

  • Atlantic Medicine & Wellness

    $100

  • Ali Adamo

    $50

  • Ashley Corazon

    $20

  • Lisa V.

    $50

  • Nicole Adamo

    $50

  • ev and Ralph

    $150

  • Mark and Esther McMahon

    $250

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137% Raised of $10,000 Goal

Fundraise for this Campaign

The Team: $13,665 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Kelly Greco Langschultz

Amount Raised

$7,310

 

73% Raised of $10,000 Goal

Fundraiser Title

Annie Langschultz

Amount Raised

$6,355

 

64% Raised of $10,000 Goal

Fundraiser Title

evelyn arbito

Amount Raised

$0

Donor Comments

Mark and Esther McMahon

Mark and Esther McMahon

DONATION: $250

3 years ago

ev and Ralph

ev and Ralph

DONATION: $150

3 years ago

Nicole Adamo

Nicole Adamo

DONATION: $50

3 years ago

Lisa V.

Lisa V.

DONATION: $50

Good luck Kelly!!!! Xoxo 3 years ago

Ashley Corazon

Ashley Corazon

DONATION: $20

Good Luck Kelly! 3 years ago

Ali Adamo

Ali Adamo

DONATION: $50

3 years ago

Atlantic Medicine & Wellness

Atlantic Medicine & Wellness

DONATION: $100

3 years ago

Buttaci & Leardi, LLC

Buttaci & Leardi, LLC

DONATION: $500

3 years ago

Tom and Lauren Gianni

Tom and Lauren Gianni

DONATION: $40

3 years ago

Joseph Massood, Esq.

Joseph Massood, Esq.

DONATION: $200

3 years ago