Skip to content
clarabragg's profile image - click for profile

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

$360,506

MONEY RAISED
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  • Julie

    $100

  • Adela Hiller

    $25

  • Anonymous

    $100

  • Ricky and Debbie Seale

    $100

  • Rebecca Anderson

    $100

  • LeAnn and Greg Blackman

    $100

  • Alan and Kim Cripps, POP Parishioners

    $100

  • Marla Lambert

    $25

  • Bill and Barbara Ranieri

    $250

  • Linda L George

    $200

  • Anonymous

     

  • Anonymous

    $100

  • The Colbert Family

    $250

  • A Mills

    $50

  • Anonymous

    $50

  • Judith & Bob Abernathy

    $25

  • United Way of Greenville County, SC

    $845

  • The Caring Foundation

    $500

  • Sherrin & Martin Puente

    $50

  • Ann & David Smith

    $50

  • Pam & Jerry Benson

    $100

  • KDM Service Corporation

    $500

  • Shanalee, LLC

    $1,000

  • Heldenfels Enterprises, LLC

    $100

  • Patrick & Candace Harbison

    $100

  • Cori Noble

    $103

  • Doug & Lisa Hughes

    $100

  • Philip Arthur & Sarah Hubbard

    $100

  • Brenda Terrell & Kenneth Lowe

    $200

  • John & Melody Greene

    $50

  • Joseph & Melinda Guillame

    $500

  • Frank Brocato

    $100

  • Good Smoke, LLC / Jim N Nick's restaurants

    $500

  • Sikes Children's Shoes

    $250

  • Agnes Conley

    $50

  • Hackfin Group, LLC

    $31

  • Roy & Victoria Dobias

    $100

  • Jane Rowland

    $100

  • Marissa & William Quinn

    $50

  • Coleman & Lindsay Harris

    $50

  • Luis & Kylee Pedrosa

    $50

  • Crissi & Griff Waters

    $50

  • David & Joy Gonzalez

    $10

  • Jeff & Ashley Thompson

    $20

  • Luis & Kylee Pedrosa

    $20

  • Molly & Brian Nickoles

    $1,725

  • Teresa Pitts

     

  • Jim Richardson

     

  • Valerie Hall

    $100

  • Kelsey Louise Ozuna

     

  • The Pasquino Family

    $100

  • Tom and Deborah Conley

    $100

  • Erica Goggans

    $25

  • Albert Co

     

  • Kathy Salazar

    $30

  • Salethia Holifield

    $50

  • Ruth Dahlstrom

    $100

  • The Grays

    $50

  • Dana Winek and Jason Linebarger

     

  • Sue and Rich Franco

    $100

  • Jason, Ashley, Noah, and Zoey Sanchez

    $25

  • Anonymous

    $50

  • Mark and Erica Coppic

    $100

  • Dan & Ashley Sellers

    $100

  • The Brasher Family

    $250

  • Stephanie Caroselli

    $50

  • Anonymous

    $50

  • Jennifer Anderson

    $50

  • Amy Cass

    $100

  • Raul Garcia

    $100

  • Jeff and Heather Sabounji

    $25

  • Allison Trogus

    $50

  • The Herron Family

     

  • Anonymous

    $100

  • Sean Horan

    $30

  • Frank, Maria and Ellie Mullins

    $100

  • Mike, Cara, Cameron and Carter M.

     

  • Anonymous

    $25

  • Laura Marcantonio

     

  • Dave & Helen Krause

     

  • CYNTHIA TAYLOR

    $25

  • Angie Gilliver

    $50

  • Lisa M

    $100

  • Laura Chavkin

     

  • Mary Kovar

    $50

  • Sherry house

    $50

  • Joseph Moulder

    $500

  • Kathryn Hose

    $25

  • Anonymous

     

  • The Setty's

    $500

  • Alex and Anna Jones

    $100

  • Stacey Smith

    $100

  • Mandy Poupko

    $20

  • Trey, Lee, Avery, Riley and Kinley

    $250

  • Lisa and Jeff Kaufman

     

  • Dan and Iva Hecker

    $50

  • Matt & Susie Lowry

    $100

  • The Moore Family

     

  • Anonymous

     

  • Karen Dreschniol and the Emerson Branch

    $250

  •  
  •  
  •  
 

72% Raised of $500,000 Goal

Fundraise for this Campaign

The Team: $360,506 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Ryan and Jenny Bragg

Amount Raised

$355,576

 

71% 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

Karen Dreschniol and the Emerson Branch

Karen Dreschniol and the Emerson Branch

DONATION: $250

6 hours ago

Anonymous

ANONYMOUS

8 hours ago

The Moore Family

The Moore Family

From Izzy to Clara 1 day ago

Matt & Susie Lowry

Matt & Susie Lowry

DONATION: $100

1 day ago

Dan and Iva Hecker

Dan and Iva Hecker

DONATION: $50

3 days ago

Lisa and Jeff Kaufman

Lisa and Jeff Kaufman

5 days ago

Trey, Lee, Avery, Riley and Kinley

Trey, Lee, Avery, Riley and Kinley

DONATION: $250

6 days ago

Mandy Poupko

Mandy Poupko

DONATION: $20

6 days ago

Stacey Smith

Stacey Smith

DONATION: $100

For Erin, for Clara 6 days ago

Alex and Anna Jones

Alex and Anna Jones

DONATION: $100

Wish you the best during your trial ! God is in control! 1 week ago