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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

$419,469

MONEY RAISED
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  • Mark or Joan Ohrn

    $100

  • Jan Jenkins & Charles Ardevino

    $800

  • Mr. & Mrs. Robert Smith

    $50

  • Control Air Conditioning Corporation

    $162

  • Sikes Children's Shoe Company

    $300

  • Megan Urban

    $300

  • Megan Urban

    $52

  • Melinda Habingreither

    $442

  • Reishi, Inc.

    $1,700

  • John & Cathy Brown

    $100

  • Qualcomm Corporation matching

    $1,000

  • Joann & Joseph Rome

    $100

  • Russell Davis

    $75

  • Robert & Debbie Habingreither

    $1,500

  • Thomas & Ann Mayhall

    $100

  • Jack Quanstrum

    $100

  • Samuel & Joanne Orlando

    $50

  • Thomas & Maria Kilgro

    $50

  • Casey Halsey State Farm Agency

    $250

  • Mary Piazza

    $50

  • Shirley Griffin

    $100

  • Bayshore Redmont, Inc.

    $2,500

  • Edward & Donna Galotta

    $200

  • Books-A-Million

    $5,000

  • Thomas & Kristen Jacobs

    $200

  • The Cajun Cleaver, Inc.

    $100

  • Hoover Mail Center

    $100

  • Julie & Christopher Thielen

    $75

  • Chik-Fil-A at the Grove

    $373

  • Jared & Cara Nelson

    $500

  • Mary Burkel

    $20

  • Jane Lewis

    $20

  • Sean & Tasca Muscarella

    $20

  • Ashlie & Jason Burch

    $40

  • Gary & Stephanie Bedsole

    $30

  • James & Lindsay Thompson

    $30

  • Meredith & Lee Posey

    $30

  • Jennifer & Jonathan Bickley

    $30

  • Darryl & Diana Wall

    $50

  • SMTX Property Management

    $250

  • Satterwhite Ridge LLC

    $250

  • McNabb & Co. Real Estate Services

    $250

  • The Meservey Group PLLC

    $500

  • Korena Garcia

    $100

  • William & Brenda Damron

    $70

  • Michelle & Forrest Higdon

    $125

  • Kenneth & Rita Bragg

    $800

  • Melinda Habingreither

    $500

  • K & M Carswell

    $60

  • Jason & Honey Habingreither

    $120

  • Molly Ann Rosas-Garcia

    $30

  • Justin & Rebecca Dickey

    $100

  • Palmer's Restaurant

    $250

  • Noel Gould

    $100

  • Melinda Habingreither

    $637

  • Brenda Remme

    $1,000

  • Mrs. Ted Breihan

    $500

  • Will & Erin Conley

    $1,400

  • Sharon Kurtz

    $60

  • Rick & Sharon Bell

    $120

  • John David Carson

    $25

  • Anonymous

     

  • Anonymous

    $25

  • The Minton girls (Abby, Emma & Julie)

     

  • Marina Noelle Hall

    $250

  • Crissi Waters

    $25

  • Tom and Deborah Conley

    $100

  • Anonymous

    $127

  • The Amaro Family

    $25

  • Anonymous

    $50

  • Anonymous

    $25

  • Brock Family

    $200

  • In the name of Jesus

    $1,000

  • JoAnna Booth

    $125

  • Brooke Burnett

    $50

  • Anonymous

    $25

  • A friend of Betty Moulder

    $10,000

  • Chris and Gary Winek

    $100

  • Patti and Denny Danley

    $30

  • Tracy Parker (Thigpen)

    $100

  • Summer Daoud

    $25

  • Adria Sullivan

    $25

  • Leslie Phillips, MBA 2011

     

  • Joe and Ruth Dahlstrom

    $100

  • Anonymous

    $100

  • Jaryn creasy

     

  • Renata & Darryl Besemer

    $100

  • Michael Carroll

    $50

  • Focus Fab LLC

    $500

  • Fran and Bob Walker

    $25

  • Anonymous

    $100

  • Katie Barnes

     

  • Anonymous

    $25

  • Carol Delaney

    $50

  • Anonymous

    $25

  • Jenny Steiger

    $25

  • Anonymous

    $500

  • Anonymous

     

  • Patrick Ong

    $50

  • Anonymous

     

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84% Raised of $500,000 Goal

Fundraise for this Campaign

The Team: $419,469 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Ryan and Jenny Bragg

Amount Raised

$414,539

 

83% 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

Anonymous

ANONYMOUS

1 day ago

Patrick Ong

Patrick Ong

DONATION: $50

Thinking about your family and keeping you in my prayers. Please let me know if you ever need anything. -Patrick (aka. Ong Show) 2 days ago

Anonymous

ANONYMOUS

In honor of Shelley Berman for bringing Clara and others to our attention 3 days ago

Anonymous

ANONYMOUS

DONATION: $500

From one Longhorn to the next.....prayers for little Clara, and your family. I hope this will help. 3 days ago

Jenny Steiger

Jenny Steiger

DONATION: $25

For Clara, Jenny and Ryan, from a McCombs MBA '10 classmate 3 days ago

Anonymous

ANONYMOUS

DONATION: $25

5 days ago

Carol Delaney

Carol Delaney

DONATION: $50

Happy Birthday, Melinda! 6 days ago

Anonymous

ANONYMOUS

DONATION: $25

1 week ago

Katie Barnes

Katie Barnes

2 weeks ago

Anonymous

ANONYMOUS

DONATION: $100

2 weeks ago