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Aaron Blank's Fundraiser:

2016 SAN JOSE ROCK 'N' ROLL MARATHON

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UPDATE: Postponing run... until 2017
August 30, 2016

Folks, thanks so much for your inspiration over the past couple months/weeks. Due to a few things out of my control, I've decided to postpone  See more
Aaron Blank

THE STORY:

Adopting a child from Africa has been a life-long dream for our family. When we finally got our hands on our baby boy from Ethiopia we quickly learned of Epidermolysis Bullosa, which is a devastating diagnosis. It is a diagnosis that means simply holding our son could cause him pain. There is no known treatment or cure. When Ermias was brought to the U.S. in April 2013, we spent the first month with him at Seattle Children's. He had a continuous fever of 104 degrees and was resistant to multiple antibiotics thanks to the cocktail of drugs he was given in Ethiopia. Doctors here got him what he needed to threat the infection giving him the severe fever, but then came the diagnosis. "Epidermolysis Bullosa." Most refer to it as "EB." It is incredibly rare, affecting only 30,000 people in the U.S. The connective tissue disease means our son is missing Keratin from the layers of his skin. It's not just painful, it's debilitating. Essentially if you think of the layers of skin like Velcro, the one layer is missing the hooks of the Velcro so the skin layers slide on each other so any friction causes a blister, like it would in you and me if we wore a tennis shoe. But for him it could be the seam of his clothing, it could be you picking him up, it could be him crawling, it could be him walking on his feet. All of those things cause blisters. If you think about it, basically, daily life is causing him blisters, and then pain. There is no cure for EB. There's not even a treatment. Today, Ermias's nightly routine is unbelievable. Each night he gets a sterile bath so that the blisters soften and then we pull him out and he gets all of his blisters popped or lanced and then drained. If necessary, we put on a series of ointments. It tends to soften up his wounds that way they won't itch so much. So now I'm motivated. I'm hopeful. Hope could be the most powerful drug in this fight against EB. Two years ago we became aware of an organization focused on finding a cure for this dreadful disease you've never heard of... it is called EB Research Partnership. EB Research Partnership is working to treat and cure EB as quickly and efficiently as possible. They are focused on a mission by partnering with non-profit and for-profit entities and individual donors, as well as with the EB and research communities. They are the largest nonprofit dedicated to funding research aimed at treating and ultimately curing EB. I joined the board of the organization in October of 2015 and now I'm running in my second half-marathon to raise awareness and funds for research. Leading researchers say treatments and a cure for EB are within reach. Though they have made significant progress, they need much greater resources in our pursuit of a cure. So... I'm raising money for the cause. With hope that they will find a cure so that all of the pain that Ermias experiences goes away... and so that Ermias can one day run---pain free. Partner with us in our mission to further life-saving research. (Thank you to MyNorthwest.com and KIRO radio for the story on Ermias...)

DONATE

To This Fundraiser

$2,105

MONEY RAISED
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  • Brianne Miller

    $50

  • Mesfin

    $100

  • David Landis & Sean Dowdall

    $100

  • Brigid Graham

    $50

  • Lenny Wilkens Foundation

    $500

  • Larry Asher

    $100

  • Hannah Hedrick

    $30

  • Jim and Laura Bianchi

    $150

  • The Kerns family

    $100

  • Francie Fitzpatrick

    $100

  • Theresa Stone

    $250

  • Kyle Vixie

    $25

  • Marcia Peterson

    $50

  • The Fernandez Family

    $25

  • Cliff Lynch

    $100

  • Alan Chitlik

    $250

  • Scoville Public Relations

    $100

  • Kelsey Stefanik-Guizlo

    $25

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21% Raised of $10,000 Goal

The Team: $2,105 TOTAL RAISED SO FAR

Fundraiser Title

Aaron Blank

Amount Raised

$2,005

 

20% Raised of $10,000 Goal

Fundraiser Title

David Landis

Amount Raised

$100

Donor Comments

Kelsey Stefanik-Guizlo

Kelsey Stefanik-Guizlo

DONATION: $25

1 year ago

Scoville Public Relations

Scoville Public Relations

DONATION: $100

1 year ago

Alan Chitlik

Alan Chitlik

DONATION: $250

You are so inspriring. Keep it up. 1 year ago

Cliff Lynch

Cliff Lynch

DONATION: $100

Best of Luck Blank! 1 year ago

The Fernandez Family

The Fernandez Family

DONATION: $25

Best of luck Aaron! We'll be cheering for you along the way! 1 year ago

Marcia Peterson

Marcia Peterson

DONATION: $50

Go Aaron, go! 1 year ago

Kyle Vixie

Kyle Vixie

DONATION: $25

1 year ago

Theresa Stone

Theresa Stone

DONATION: $250

Go Aaron! 1 year ago

Francie Fitzpatrick

Francie Fitzpatrick

DONATION: $100

1 year ago

The Kerns family

The Kerns family

DONATION: $100

For Ermius 1 year ago