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Douglas Beckett's Fundraiser:

A Cure for Clara

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BENEFITING: Cure GM1 Foundation

ORGANIZER: Ryan and Jenny

Douglas Beckett

THE STORY:

Ryan and Jenny Bragg wrote -

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

 

Win Big Prizes: 

 

Starting 9/22 at 2:00pm ET and ending on 11/10 at 11:59:59am ET... 

 

-Every $10 you donate is an entry to win a $500 VISA gift card. 

 

-Get 5 donations for a chance to win a $500 Patagonia shopping spree at Moosejaw. 

 

-Raise at least $500 for a chance to win another $500 for your cause. 

 

Click here for the Visa Gift Card rules. 

Click here for the Patagonia shopping spree rules. 

Click here for the $500 donation rules. 

 

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

$4,230

MONEY RAISED
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  • Douglas Beckett

    $150

  • Deb Glubczynski

     

  • David & Danielle Lapaglia

    $150

  • Sheran Shepps

    $25

  • Melinda Habingreither

    $120

  • Andrew & Catherine Crain

    $100

  • Melinda Habingreither

    $110

  • Mark & Francis Stock

    $2,000

  • Erin & Will Conley

    $1,300

  • Frank Buschgans

    $50

  • Valentin & Yolanda Almendarez

    $50

  • Sharon Kurtz

    $150

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846% Raised of $500 Goal

Fundraise for this Campaign

The Team: $449,686 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Ryan and Jenny Bragg

Amount Raised

$444,756

 

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

Mark & Francis Stock

Mark & Francis Stock

DONATION: $2,000

7 months ago

Erin & Will Conley

Erin & Will Conley

DONATION: $1,300

7 months ago

Frank Buschgans

Frank Buschgans

DONATION: $50

7 months ago

Valentin & Yolanda Almendarez

Valentin & Yolanda Almendarez

DONATION: $50

7 months ago

Sharon Kurtz

Sharon Kurtz

DONATION: $150

7 months ago

David & Danielle Lapaglia

David & Danielle Lapaglia

DONATION: $150

7 months ago

Sheran Shepps

Sheran Shepps

DONATION: $25

7 months ago

Melinda Habingreither

Melinda Habingreither

DONATION: $120

7 months ago

Andrew & Catherine Crain

Andrew & Catherine Crain

DONATION: $100

7 months ago

Melinda Habingreither

Melinda Habingreither

DONATION: $110

7 months ago