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Marilyn Ash's Fundraiser:

Tyler's DMD Curesaders

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Marilyn Ash

THE STORY:

Meet Tyler James Ash, our rambunctious, fun-loving 5 year old. He has an infectious smile and personality that lights up the room. Although Tyler looks like your regular preschooler on the outside, he's fighting a major battle on the inside. Our sweet perfect boy was diagnosed with Duchenne Muscular Dystrophy at the very tender age of 3. This progressive disease will begin to strip away his very ability to walk, run, jump, breathe, eat and even give his mom a hug. This disease knows no boundaries and will continue to destroy other muscle groups including his heart and lungs. The onset of these symptoms will begin in just 5 short years. Most boys will begin to lose their ability to walk around the age of 10 followed by full-time wheelchair use in the mid-teens. It's 100% terminal with a life-expectancy around the age of 25. These are not easy statistics to process as a parent. Looking into his future is just a grim reminder that our time together is limited. Knowing your child is weakening every year makes each birthday painfully bittersweet. This is the path that he would inevitably be faced with until now.

Tyler has an opportunity to be spared from the devastation of DMD. He has a duplication of exon 2 on the dystrophin gene. Currently, Dr Kevin Flanigan's team at Nationwide Children's Hospital is doing amazing work with exon 2 duplications and have developed a treatment specific for this mutation. This is the answer we've been praying for!  This treatment would not only help Tyler but other boys with mutations within the first few exons. This could change the course of this rare disease for a community of children. An opportunity that I never thought existed. Tyler's uncle passed away from the very same disease in 2005. It was a heartbreak that I thought I would never have to endure again, but I was so very wrong. Here we are now in the greatest fight of our lives with our own son.

The drug we need that could save his life is currently in a lab waiting for funding. The current need is to raise $800,000 to fund a toxicology study and biodistribution study. The funds will allow completion of all pre-clinical data. These final pre-clinical studies need to be complete before moving into human clinical trial. All of the money donated here will go to Dr. Flanigan's research for this study. The treatment is there waiting. We just need your help to get to the finish line.

For additional information on Dr. Flanigan's research, please visit the link below. 

http://cureduchenne.com/flanigan/

Thank you so much for your support! 

Chris and Marilyn Ash

$825

MONEY RAISED
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  • Marilyn Ash

    $50

  • Marilyn Ash

    $50

  • Chris Ash

    $100

  • Mary Ash

    $50

  • Kimberly Sandiford

    $100

  • Shelly Plehn

    $25

  • Maria Roberts

    $50

  • Deb & Bill Daly

     

  • Tracey, Tom, Nicholas and Lexie Dulian

    $50

  • Heather Starks

    $25

  • Leah Swartzbaugh

    $25

  • Anonymous

    $50

  • Ann Schnirring Kendrick

    $50

  • Kristine Johnson & Amy Christiansen

    $100

  • Dominiks

    $50

  • Ric Oliva

     

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2% Raised of $50,000 Goal

Fundraise for this Campaign

The Team: $825 TOTAL RAISED SO FAR

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Fundraiser Title

Marilyn Ash

Amount Raised

$825

 

2% Raised of $50,000 Goal

Fundraiser Title

Tim Bullock

Amount Raised

$0

Donor Comments

Ric Oliva

Ric Oliva

1 year ago

Dominiks

Dominiks

DONATION: $50

1 year ago

Kristine Johnson & Amy Christiansen

Kristine Johnson & Amy Christiansen

DONATION: $100

1 year ago

Ann Schnirring Kendrick

Ann Schnirring Kendrick

DONATION: $50

For Tyler's fight 1 year ago

Anonymous

ANONYMOUS

DONATION: $50

1 year ago

Leah Swartzbaugh

Leah Swartzbaugh

DONATION: $25

1 year ago

Heather Starks

Heather Starks

DONATION: $25

1 year ago

Tracey, Tom, Nicholas and Lexie Dulian

Tracey, Tom, Nicholas and Lexie Dulian

DONATION: $50

I can't even imagine what your family and other families are going through. It breaks my heart to see little ones suffer. 1 year ago

Deb & Bill Daly

Deb & Bill Daly

1 year ago

Maria Roberts

Maria Roberts

DONATION: $50

Prayers for you all 1 year ago