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Kathleen Twible's Fundraiser:

2015 NY Marathon

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Kathleen's Photo
Kathleen's Photo
Kathleen's Photo

BENEFITING: EB Research Partnership

ORGANIZER: EB Research Partnership

EVENT: 2015 TCS New York City Marathon

EVENT DATE: Nov 01, 2015

Kathleen Twible

THE STORY:

 

Dear Family and friends,

On November 1, 2015, I will be running the NYC Marathon in honor of my son Robert John Twible.  I will be running with team EBRP in hopes to finding a cure for this horrible disease.  Since last year, Robbie has had three surgeries in order to open his esophagus and clear the blistering.  Walking has become a major chore for him.  The everyday things that we take for granted are a major challenge for him.  EB is taking its toll on his body and fighting back is so difficult.  

In spite of all the pain that he endures, Robert continues to fight for a normal life.  He wants to be like every other 13 year old boy but unfortunatley that is so far from the truth.  He is a 13 year old boy who spends almost 3 hours of his day being bathed and bandaged. He takes pain medication just to get through a bath.  He often needs to be carried to his bed because taking another step would be too much.  EB has taken so much of his body, but will never take his spirit and his smile.  

It is that spirit and smile that will get me through 26.2 miles...I will run for my son in hopes that he one day will be able to run with me.  My last marathon will be his first.

Please join me in my efforts to find a cure for EB.   Help Robbie and all of his friends live a life that is free of pain, free of blisters and bandage changes.  These children dream of the day that they can say  "I once had EB"   Let's make that dream their reality.

www.ebresearch.org

 

EB RESEARCH PARTNERSHIP

We are working to treat and cure EB as quickly and efficiently as possible. We fulfill our mission by partnering with non-profit and for-profit entities and individual donors, as well as with the EB and research communities.

We are the largest nonprofit dedicated to funding research aimed at treating and ultimately curing EB, a group of devastating and life-threatening genetic skin disorders that affect children from birth.

Leading researchers say treatments and a cure for EB are within reach—for  Robbie, John Hudsson, Shane, Ryan, Jackson, Michael, Jennifer and every other person suffering from this horrific condition. Though we have made significant progress, we need much greater resources in our pursuit of a cure.

Partner with us in our mission to further life-saving research.

http://ebresearch.org/

http://www.thedoctorstv.com/videolib/init/1009

$12,304

MONEY RAISED
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  • Jeanne & Brian DeMasters

    $100

  • Abbie Levine

     

  • Jay Brunetti

    $100

  • Anonymous

    $20

  • Erin

    $100

  • Kevin, Dawn, Jenna, Kristen & TJ

    $25

  • Shannon O'Reilly Basore

    $50

  • Whitney

    $25

  • John & Annie

    $100

  • Chris & Maura

    $100

  • The Imperatore Gang

    $50

  • LG

    $100

  • The Fleshel's

    $25

  • Anonymous

     

  • Richard & Vilma Matteis

    $100

  • Erin Wilder

    $100

  • Marni Shapiro

    $250

  • Liz Cox

    $20

  • Katelin, Linda, & Paul Kelly

    $100

  • Geriann Grave Fisher

    $50

  • Anonymous

    $50

  • Patricia Russo

     

  • Lynette, Nicole and Jillian Clark

     

  • Randy Downs - Tiles Unlimited

    $10

  • Amy Callahan

    $40

  • Barbara & Mike Eisenberg

    $100

  • Annette Yorke

    $25

  • Keelin Reilly

    $100

  • Anonymous

    $100

  • Brad and Sandy Kaufman

    $200

  • The Balestra Family

    $50

  • Jules, Amy, Lee, and Sammy

    $100

  • Dylan M

    $500

  • Chris, Andrew, Alex & Erin Schwartz

    $100

  • Iris R. Rubin (Andrew Schwartz Aunt)

    $25

  • Barb & Ken Moore (Chris Moore's parents)

    $50

  • Howie and Amy Kubel

    $100

  • Iris and Jeff Kubel

    $50

  • The Kerrane Family

    $100

  • Alternative Closet Company

    $150

  • Charlotte and Ryan Kenny

    $200

  • Love Thy Neighbors

    $100

  • Danielle M Becker

     

  • The Palleschi Family

     

  • Strohmeier Family

     

  • Julie Fegan

    $25

  • The McElroy Family

     

  • Melissa Blady

    $25

  • Regina Savarese

    $50

  • Abby and Brian

    $50

  • Jeanine Pucci

    $25

  • Fran and Ron Kasman

    $50

  • The Cocchi Family

    $50

  • Joseph & Jeanne Moran

    $25

  • Hot Chocolate for a Cure

    $500

  • Sepy Roubeni (Mick, Lexy, Laura, Adam)

    $100

  • The Ahdoots

    $100

  • rebecca sassouni

     

  • Anonymous

    $1,000

  • Moradof family

    $100

  • Julia and Babak Ebrahimzadeh

    $100

  • Jennifer, Danny, Luke, Julien & Brooks Hakimian

    $100

  • Ella & Noa Pourmoradi

    $150

  • Mojdeh Noghreh

    $126

  • Alex Victory

    $100

  • Shabnam and Joseph Sakhai

    $100

  • Ari Kashanian

    $50

  • Ilona Trokel

    $50

  • Jared & Zakary Kimiabakhsh and Family

    $100

  • JOSEFINE & KADIR KAYA

    $126

  • Dina, David, Lea, Julia and Celine Khani

    $100

  • The Hakakians (Laura, Sarah, Juliana)

    $100

  • Abigail, asher and jaden Livian

    $250

  • Cathy and Dennis O'Hagan

    $100

  • Solomon family

    $50

  • Mikayla & Max Hendizadeh

    $100

  • Shaul, Sanam, Ariella and Noya Sakhai

    $126

  • Nancy Muller

    $50

  • JFK Denim Day for EB

    $895

  • Lamoretti Family

     

  • Aaron, Maya, Talia and Jojo Ohebshalom

    $100

  • Anonymous

     

  • Bitta Farzin Zakary Brigitte & Bellina

    $100

  • donna profeta

    $100

  • Mona Haber

    $50

  • Anonymous

    $20

  • Moalemi

     

  • Vinny, Joanna, Alexa, Vincent and Michael Festa

    $50

  • The Floridia Family

    $75

  • Benmoha Family

    $118

  • Zachary Levine

    $118

  • The D'Egidio Family

    $25

  • GN UPTC Board Member

    $25

  • Natalie Kiwi

    $50

  • JFK Family

    $130

  • Michelle Korman

    $100

  • UPTC Board Member

    $25

  • Maddy Constantino

    $25

  • Stacy Grimm

    $50

  • Engels

    $50

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The Team: $63,353 TOTAL RAISED SO FAR

Fundraiser Title

Kathleen Twible

Amount Raised

$12,304

Fundraiser Title

Annie Langschultz

Amount Raised

$6,750

 

135% Raised of $5,000 Goal

Fundraiser Title

Cortney Cooper

Amount Raised

$3,886

Fundraiser Title

Alexander Silver

Amount Raised

$3,575

Fundraiser Title

Rachael Foster-Yellen

Amount Raised

$3,310

 

132% Raised of $2,500 Goal

Fundraiser Title

Cathy Molino

Amount Raised

$3,223

Fundraiser Title

Jenny Horne

Amount Raised

$3,046

 

122% Raised of $2,500 Goal

Fundraiser Title

Kate Zelles

Amount Raised

$2,937

Donor Comments

Engels

Engels

DONATION: $50

2 years ago

Stacy Grimm

Stacy Grimm

DONATION: $50

2 years ago

Maddy Constantino

Maddy Constantino

DONATION: $25

2 years ago

UPTC Board Member

UPTC Board Member

DONATION: $25

2 years ago

Michelle Korman

Michelle Korman

DONATION: $100

2 years ago

JFK Family

JFK Family

DONATION: $130

2 years ago

Natalie Kiwi

Natalie Kiwi

DONATION: $50

2 years ago

GN UPTC Board Member

GN UPTC Board Member

DONATION: $25

2 years ago

The D'Egidio Family

The D'Egidio Family

DONATION: $25

You are a inspiration ! 2 years ago

Zachary Levine

Zachary Levine

DONATION: $118

I hope that your son gets better soon and that a cure is found for this disease. 2 years ago