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Ryan and Jenny Bragg's Fundraiser:

A Cure for Clara

Ryan and Jenny's Photo
Ryan and Jenny's Photo
Ryan and Jenny's Photo
Ryan and Jenny's Photo

BENEFITING: Cure GM1 Foundation

Ryan and Jenny Bragg

THE STORY:

We are terrified about what the future holds for our beloved daughter, Clara.  Clara is 2 1/2 years old and is such a bright and energetic spirit, constantly trying to keep up with her older brother whom she adores.  She is such a bright light in our lives, and her feisty yet friendly demeanor wins over everyone she encounters.

A year ago Clara began to plateau developmentally, causing us great concern.  She has always struggled with being stable enough to walk independently and lost the few words she ever spoke.  After chasing a diagnosis for an entire year,  we finally received heartbreaking news no parent could ever prepare to hear.

In August 2016, we were told that Clara has a terminal neurological condition called Late Infantile GM1 Gangliosidosis.  This disease will slowly take her abilities away and cause seizures, blindness, deafness, and the inability to eat and move.  We are devastated over the grim diagnosis for our beautiful girl.  Without treatment our worst fears will be realized as we will slowly watch our daughter fade away, ultimately ending her precious life far before her time.

There is no treatment or cure yet, but there is concrete reason for hope.  Decades of medical research has led the world’s two leading GM1 researchers to the cusp of a potential cure already proven effective in animal trials.  A human gene therapy trial could start in 2017 that could save Clara’s life, as well as other children suffering from this terrible disease.

Ultimately, funding is the greatest obstacle between Clara and this potentially lifesaving treatment.  A significant amount of money has already been raised by families affected by this disease and the Cure GM1 Foundation was created with the sole purpose of funding this research and trial.  Our family has set a goal to raise $500k for the Cure GM1 Foundation to help make this trial a reality.  We are asking you to consider donating whatever your heart and means allow to help us reach our goal.  All donations go straight to the foundation and are 100% tax deductible.

Every donation will help us inch closer to Clara getting into the gene therapy trial before it’s too late. We are forever grateful for your support to help keep our precious girl here with us living a happy life.

With heartfelt thanks,

Jenny & Ryan

 

GM1 References:

National Institute of Health:  https://ghr.nlm.nih.gov/condition/gm1-gangliosidosis

NIH/HHS:  https://rarediseases.info.nih.gov/diseases/10126/gm1-gangliosidosis-type-2/cases/23037

Cure GM1 Foundation:  https://curegm1foundation.org/

DONATE

To This Fundraiser

$327,042

MONEY RAISED
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  • Anonymous

     

  • Cousins MaryAnn, Bellinda and Francesca DiMaria Sergi

    $50

  • Bergen Arts and Science Elem. School

    $680

  • Wolverton's

    $25

  • Stuart & BJ Shore

     

  • The Flannery Family

    $25

  • Nina Jean tenery

     

  • Maria Salazar(Kathy's Salazar Mom)

    $25

  • Anonymous

    $100

  • Aunt Anita Russo

    $100

  • Angela & RJ Sour

    $50

  • Chris and Gary Winek

    $100

  • Melinda Habingreither

    $200

  • Tom and Deborah Conley

     

  • Susan & Eric Smith

    $10

  • Annamarie & Joshua Hedman

    $100

  • Fred & Carol DiMaria

    $100

  • Melinda Habingreither

    $250

  • Diane Bonagura

    $300

  • Dianne & Vincent Pasquino

    $20

  • Raising Cane's Chicken Fingers

    $443

  • Mr. & Mrs. Robert Puente

    $110

  • Agnes Conley

    $50

  • Harper & Virginia White

    $25

  • Richard & Amy Passey

    $20

  • Brad Buck

    $100

  • Chervis Isom

    $100

  • COL & P.A. Alba

    $100

  • Ryan & Jenny Bragg

    $670

  • Joanne Case

    $20

  • Sandra Potts

    $70

  • Melinda Habingreither

    $129

  • Brenda Smith

    $1,000

  • John & Beth Schlott

    $100

  • Bruce Drobeck

    $30

  • Diane Dee

    $100

  • Georgie and Larry Murphy

    $500

  • sarah dee

    $500

  • Katie and Matt Fulmer

    $1,000

  • Audrey Pate

    $200

  • IRIS HAESE

     

  • Dyan Kellison

    $100

  • jina parmar

    $100

  • Agnes and Sam Cartner

    $50

  • Jim Black

    $100

  • Anonymous

     

  • Erica Waters

    $25

  • Anonymous

    $25

  • Angie king

    $20

  • Jay and Jeanna Sims

    $1,500

  • Ezzell Family, South Carolina

    $25

  • Jennifer Stone

     

  • Anonymous

    $25

  • Anonymous

     

  • Tiffany Young

     

  • Anonymous

    $100

  • Katie Dudley

    $25

  • Ashley Hardy

     

  • Ivy Schuster

    $100

  • Kristin Mathis

    $25

  • Anna Doughman

     

  • Annette & Marco

     

  • Jessica, Ben, & Olivia

    $10

  • Jess Rice

    $25

  • Bill & Becky Champion

     

  • Christiane Henze

    $25

  • Anonymous

    $50

  • Kevin Davis

    $25

  • Anonymous

    $25

  • Nicole Renno

     

  • Anonymous

    $25

  • Millie Piccirilli

    $25

  • Jason, Beth, Joshua, & Moriah McKenney

    $25

  • Anonymous

    $50

  • sara trackwell

     

  • Anonymous

     

  • Sarah & the Bunnies

    $100

  • Anonymous

    $100

  • Anonymous

     

  • The Hinkin Family

     

  • Melanie Strong

    $25

  • Will & Brittany Foster

     

  • Ileana

    $25

  • Janet Winters

    $25

  • Mandy Kelly

    $90

  • Anonymous

    $10

  • Anonymous

    $20

  • Anonymous

    $50

  • anonymous

    $50

  • Anonymous

    $100

  • Anonymous

    $50

  • peter hollimon

    $50

  • Laurie Jones

     

  • Veta Tortomasi

    $25

  • Patricia Curow

    $100

  • Anonymous

    $25

  • Kyra Moseley

    $20

  • Anonymous

     

  • Glennie Ferniany

    $50

  • For Clara...

    $250

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65% Raised of $500,000 Goal

Fundraise for this Campaign

The Team: $327,042 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Ryan and Jenny Bragg

Amount Raised

$322,112

 

64% Raised of $500,000 Goal

Fundraiser Title

Douglas Beckett

Amount Raised

$4,230

 

846% Raised of $500 Goal

Fundraiser Title

Gretchen Decker

Amount Raised

$250

Fundraiser Title

Sharon Moore

Amount Raised

$250

Fundraiser Title

Michael Crowley

Amount Raised

$150

Fundraiser Title

Daniel Cohen

Amount Raised

$50

Donor Comments

For Clara...

For Clara...

DONATION: $250

9 hours ago

Glennie Ferniany

Glennie Ferniany

DONATION: $50

13 hours ago

Anonymous

ANONYMOUS

22 hours ago

Kyra Moseley

Kyra Moseley

DONATION: $20

For Clara - Praying for your baby girl! 1 day ago

Anonymous

ANONYMOUS

DONATION: $25

2 days ago

Patricia Curow

Patricia Curow

DONATION: $100

2 days ago

Veta Tortomasi

Veta Tortomasi

DONATION: $25

2 days ago

Laurie Jones

Laurie Jones

2 days ago

peter hollimon

peter hollimon

DONATION: $50

2 days ago

Anonymous

Anonymous

DONATION: $50

2 days ago