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Molly Russell's Fundraiser:

Cheers to Kirby with Purple Lemonade

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Molly Russell

THE STORY:

Molly wrote -

My Aunt and Uncle formed this Foundation for my cousin, Kirby, to fight the disease she was afflicted with, and give hope that Sanfilippo and its devastating progression would not manifest itself within her. The solution seemed simple. Raise funds to enable researchers to advance and expand their work to find a cure. We chose to fight this disease.

Now 19 years later, although Sanfilippo has taken its toll on Kirby, she continues to defy her affliction with seemingly endless resolve and still an occasional smile for us to cherish.   A smile that brings us reassurance of her comfort and delight in her moments of happiness — a reminder of her amazing grace. She is our hero.

As her battle continues, our dream of a cure could come true because of the efforts of a team at Nationwide Children’s Hospital in Columbus, OH that is ready to bring its gene therapy program to human clinical trial. Joining forces with other families and foundations, we hope to raise $1 million for testing required by the FDA to bring this work to fruition as early as December, 2014.

The price to fund these studies might seem insurmountable. But all my family has to do is remember what doctors first told us 19 years ago: Nothing can be done. Enjoy her while you have her.

Then our thoughts turn to Kirby. Her fortitude must not be in vain. No matter what the future holds for her, our mission is still for her. Because it is her story that is repeated in hundreds of families around the world, hundreds of stories shaped by one cure. And it has been your faithful belief in our mission that has allowed Kirby’s story to be written.  It has been your unwavering support of the Foundation that has allowed it to issue grants totaling over $3.7 million and helped research to reach this level. It can be done.

From the early days when we chose to fight this disease and found only one researcher in the world working on Sanfilippo, to today when we face an exceptional opportunity, our mission to find a cure has never been more defined.   We ask for your support in taking this final step to turn hope of a cure into a reality.

Please help, the glass of Purple Lemonade you buy could be the one to put us over the top. CHEERS and Thank you!

DONATE

To This Fundraiser

$1,470

MONEY RAISED
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  • Melgar Suarez Family

    $25

  • Ron Ewert

    $25

  • THE CHILDRENS MEDICAL RESEARCH FOUNDATION INC

    $10

  • Ethan Beck

    $50

  • Kathi and Nick Brummet

    $50

  • Lynch

    $50

  • A long-time fan and supporter...

    $100

  • Lynn S

    $100

  • John Berzanskis/AMS Mechanical Systems, Inc.

    $250

  • the mulroys

     

  • Alex & Jackson

    $25

  • June Arra

     

  • Katie and Mike Lynch

    $500

  • Steven Schillne

    $20

  • Mike Falco

    $20

  • Greg Moore

    $20

  • Elizabeth Lewcock

    $50

  • Nancy Partipilo

     

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Fundraise for this Campaign

The Team: $6,400 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Rhianna Logan

Amount Raised

$3,060

 

0% Raised of $1,000,000 Goal

Fundraiser Title

Maggie Wilson

Amount Raised

$1,870

Fundraiser Title

Molly Russell

Amount Raised

$1,470

Fundraiser Title

Kelly Brummet

Amount Raised

$0

Donor Comments

Nancy Partipilo

Nancy Partipilo

Kirby 3 years ago

Elizabeth Lewcock

Elizabeth Lewcock

DONATION: $50

3 years ago

Mike Falco

Mike Falco

DONATION: $20

3 years ago

Greg Moore

Greg Moore

DONATION: $20

3 years ago

Steven Schillne

Steven Schillne

DONATION: $20

3 years ago

Katie and Mike Lynch

Katie and Mike Lynch

DONATION: $500

3 years ago

June Arra

June Arra

3 years ago

Alex & Jackson

Alex & Jackson

DONATION: $25

3 years ago

the mulroys

the mulroys

xoxo kirby, we are with you 3 years ago

John Berzanskis/AMS Mechanical Systems, Inc.

John Berzanskis/AMS Mechanical Systems, Inc.

DONATION: $250

3 years ago