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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

$450,178

MONEY RAISED
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  • Mrs. Ted Breihan

    $500

  • 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

     

  • Dana

    $250

  • Kevin and Rose Riley

    $1,000

  • Ruth & Joe Dahlström

    $100

  • Audra Fisher-Meza

    $250

  • Agnes Conley

    $50

  • James & Kim Taylor

    $100

  • Ken & Rita Bragg

    $250

  • American Structurepoint

    $150

  • Prince of Peace Catholic Church

    $225

  • Vicky & Michael McCarthy

    $500

  • BTS, LLC

    $5,000

  • Johnny & Shawn Evans

    $20

  • Homewood Toy & Hobby

    $250

  • Charles & Rachel Barnco

    $250

  • Rhett & Carol Plugge

    $90

  • Maureen & Terrence McCarthy

    $300

  • Jane Lewis

    $20

  • Angela Pfeiffer

    $500

  • Doug & Janet Morrison

    $100

  • Clay & Andrea Stoker

    $300

  • Two P's in a Pod

    $500

  • Daniel & Deborah Kaspar

    $60

  • Melinda Habingreither

    $125

  • Joseph & Susan Clark

    $200

  • Brenda Jenkins & Don Wallace

    $100

  • Sandra Potts

    $25

  • Willie's Grill & Icehouse

    $372

  • Terrence McCarthy

    $5,000

  • Mary & Michael Coia

    $75

  • Noble Family

    $42

  • Willie's Icehouse fundraiser - add'l donations

    $837

  • Misc. donations

    $460

  • Mary Jackson

    $35

  • Mac & Sons Automotive

    $250

  • Icing on the Cookie, LLC

    $250

  • Macie & Kathryn Dobrowski

    $50

  • Shanalee, LLC

    $1,000

  • Andrew Gray

    $25

  • Chad & Heather Eron

    $100

  • Eric & Dawn Brown

    $140

  • Christopher & Kristen Mitchell

    $50

  • Knights of Columbus #11537

    $250

  • Richie & Cydney McDowell

    $50

  • Louie's Crawfish Boil - San Marcos, TX

    $6,767

  • J. Barton Viciglio

    $250

  • Richard & Madalaine Hevia

    $20

  • Melinda Habingreither

    $579

  • Courtney Oldfield

    $100

  • Jan & Charles Ardovino

    $800

  • Bill Pfeiffer

    $2,000

  • FAITH

    $127

  • Matt, Molly, and Penny Ledbetter

    $50

  • the Milogradovs

     

  • The Piot family

     

  • For the Gambone Family

    $45

  • Lucie and Nic

    $100

  • Vivian Mora State Farm

    $100

  • Michaella Langford

    $25

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90% Raised of $500,000 Goal

Fundraise for this Campaign

The Team: $450,178 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Ryan and Jenny Bragg

Amount Raised

$445,248

 

89% 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

Michaella Langford

Michaella Langford

DONATION: $25

Praying for this sweet baby and all the other children who suffer 24 hours ago

Vivian Mora State Farm

Vivian Mora State Farm

DONATION: $100

5 days ago

Lucie and Nic

Lucie and Nic

DONATION: $100

3 weeks ago

For the Gambone Family

For the Gambone Family

DONATION: $45

4 weeks ago

The Piot family

The Piot family

1 month ago

the Milogradovs

the Milogradovs

In honor of Henry's 1st birthday 1 month ago

Matt, Molly, and Penny Ledbetter

Matt, Molly, and Penny Ledbetter

DONATION: $50

1 month ago

FAITH

FAITH

DONATION: $127

1 month ago

Bill Pfeiffer

Bill Pfeiffer

DONATION: $2,000

Barbara Pfeiffer 1 month ago

Jan & Charles Ardovino

Jan & Charles Ardovino

DONATION: $800

1 month ago