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The Charcot-Marie-Tooth Association's Fundraiser:

Julianna Snow

The Charcot-Marie-Tooth Association's Photo
The Charcot-Marie-Tooth Association's Photo
The Charcot-Marie-Tooth Association's Photo
The Charcot-Marie-Tooth Association's Photo
The Charcot-Marie-Tooth Association's Photo
 

Julianna
June 24, 2016

On 14 June 2016, our sweet Julianna went to heaven. Our hearts are broken, but we will go on because of her love. More than ever, we want to  See more

THE STORY:

"My nerves don't let me breathe so well or walk." -- Julianna Snow, age 5

I’ve never tried to raise money for anything before, and I’m not a great fundraiser because I hate asking for money. I hate CMT more though — so I’m asking now. As usual, Julianna helped me put things into perspective.

Me: Julianna, what should I do? I want to raise a lot of money for CMT, but I hate asking people for money.

Julianna: But why? It’s for CMT…

Me: I know. But I feel bad. What if they don’t have much money?

Julianna: — [spoken as if she’s stating the obvious] — Mom, if people don’t have much money, they can give just a penny.

To most people, breathing and walking might seem completely unrelated. They don’t know about Charcot-Marie-Tooth (CMT) disease, which can damage the nerves that control both. In rare instances, the disease can be fatal. This is the case for our Julianna, whose CMT is life-threatening. 

Last night, during a rare quiet moment:

Me: Julianna, what’s in that big brain of yours right now?

Julianna: I’m walking. On the sidewalk.

Me: Oh?

Julianna: I’m walking, and nothing is bothering me – except for Alex. I’m wearing my colorful skirt and colorful shirt.

Me: Where are you going?

Julianna: The playground, of course!

I am grateful for Julianna’s huge imagination but I wish that she didn’t need it to walk.

The CMTA is funding an aggressive research initiative to find a cure. We’re happy that going public with Julianna’s thoughts on choosing heaven over hospital has raised awareness about CMT. Now we’re asking people to please help us raise money for the CMTA.

We want to pay them back--and then some. Please give to the CMTA... even if only a penny. – Michelle Moon, Julianna’s mom

To learn more about Julianna’s story, visit Michelle’s blog at www.juliannayuri.com

Artist credit goes to Christine Stalie. 

Photography credit goes to Charles Gullung. 

DONATE

To This Fundraiser

$32,993

MONEY RAISED
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  • Jacinta Gantz

    $50

  • Anonymous

     

  • Anonymous

     

  • Sarah Coats

    $100

  • The Morales'

    $100

  • Dulce Soto

    $25

  • Jeremy, Kitty, Jimmy, Terry, Timmy, and Princess Leonila Moss :)

    $30

  • Anonymous

     

  • Lorna Redd

    $100

  • Bruce and Laurie Smith

    $50

  • The Snader Family

    $10

  • Melanie

     

  • Duck Duck Purse

    $75

  • Rachel Deely

    $25

  • Joy Bach

    $50

  • Connie

    $50

  • Michelle Moon

    $75

  • Karen P

    $25

  • JustBenny

    $10

  • Anonymous

    $100

  • Anonymous

    $500

  • Kim and Keith Riew

    $500

  • David Marshall

    $100

  • M Moon

    $870

  • Lisa

    $46

  • Jennifer, Dave and Gus

    $50

  • Anonymous

    $100

  • Anonymous

    $25

  • Anonymous

    $25

  • Adam, Lesley, and Milo

    $100

  • Chad Lavender

     

  • Capitol Seniors Housing

    $1,000

  • Pavan

    $100

  • Brian Kelly

    $200

  • Sean Ambrose

    $250

  • Charlotte Hiller

    $100

  • Paul Weir

    $100

  • Richard & Sandy Houk

    $250

  • David & Laurie Gantz

    $25

  • Matt Hodson

    $50

  • Jessica & Joseph Jedlowski

    $100

  • Anonymous

    $25

  • Eudora

     

  • Ed

     

  • Wayne Tatusko

    $200

  • Jill

    $50

  • Rick Swartz

    $200

  • Jeff and Pam Palmucci

    $1,000

  • Praveen Yangam

    $30

  • Dean

    $25

  • Catherine Lannon, MD

     

  • Anonymous

    $20

  • Anonymous

    $10

  • Anonymous

    $25

  • tom and hillary

    $100

  • Anonymous

    $25

  • Edwin Robalino

    $100

  • Anonymous

    $25

  • Ryan, Julie and Adrien Morrison

    $150

  • Danielle Morgan

    $250

  • Mark and Julie Wiesner

     

  • Anonymous

    $25

  • Anonymous

    $50

  • Anonymous

     

  • Shelley and Macey Barnard

    $10

  • The Homes Family

    $50

  • Anonymous

    $50

  • Jane Li

    $100

  • bob and marilyn lewis

    $100

  • GreenFox

    $50

  • Destiny Hagendorfer

    $25

  • Marie Sandoval

    $50

  • Sonali

     

  • Anonymous

    $100

  • Mike

    $25

  • Jeremiah, Felisha, Emme & Merritt

    $50

  • JMC

    $75

  • Lynn Kang

    $50

  • Anonymous

    $50

  • Barry & Sue

    $100

  • Samira, Brian and Rehan

    $200

  • YoungNa Kim, Jennifer Kim, Patty Park

    $150

  • Elizabeth and Paul Dendy

    $500

  • Bob DeRosa

     

  • Sung-Sin Park

    $100

  • Alex Snow

    $34

  • Anonymous

    $25

  • Michelle Moon

    $919.29

  • Emily Donovan

    $50

  • Sarah Coats

    $25

  • Chris Yenchek

     

  • Julianna Snow

    $100

  • The Sisterman Family

    $50

  • The Yuens

    $100

  • Phil Schwartau

    $1,000

  • The Clairmont/Greseth/Donovan Family

    $50

  • Anonymous

    $50

  • Anonymous

    $100

  • Anonymous

    $100

  • Megan Noh

    $50

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55% Raised of $60,000 Goal

Fundraise for this Campaign

The Team: $32,993 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

The Charcot-Marie-Tooth Association

Amount Raised

$32,488

 

54% Raised of $60,000 Goal

Fundraiser Title

Paul Weir

Amount Raised

$450

Fundraiser Title

Praveen Yangam

Amount Raised

$30

Fundraiser Title

See Moua

Amount Raised

$25

Fundraiser Title

Edwin Robalino

Amount Raised

$0

Donor Comments

Megan Noh

Megan Noh

DONATION: $50

In Memory of Julianna Yuri Snow 8 months ago

Anonymous

Anonymous

DONATION: $100

Blessed by Julianna and the Snow Family - we will always remember you 1 year ago

Anonymous

ANONYMOUS

DONATION: $100

Such a beautiful life she lived. Thank you for sharing. 1 year ago

Anonymous

ANONYMOUS

DONATION: $50

In the fight, until there is a cure 1 year ago

The Clairmont/Greseth/Donovan Family

The Clairmont/Greseth/Donovan Family

DONATION: $50

2 years ago

Phil Schwartau

Phil Schwartau

DONATION: $1,000

2 years ago

The Yuens

The Yuens

DONATION: $100

For Julianna because she will never be forgotten. 2 years ago

The Sisterman Family

The Sisterman Family

DONATION: $50

Julianna smiles and imagination have touched our hearts. 2 years ago

Julianna Snow

Julianna Snow

DONATION: $100

We are friends of Steven Lee. Your story and Juliana's smile touched our hearts. 2 years ago

Chris Yenchek

Chris Yenchek

In memory of Julianna's beautiful Faith 2 years ago