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Anne OConnor-Smith's Fundraiser:

Running for Rare—Boston Marathon

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Anne OConnor-Smith

THE STORY:

April 18, 2016 I will run the Boston Marathon in honor of Cassandra “Cassie” Samborski (January 7, 1994 – December 9, 2015 ~ Niemann-Pick Disease Type B), who courageously fought the NPB battle for 21 years.  Cassie was my hero, the same age as my youngest daughter, and one of the toughest, happiest people I have met.    

I hope to raise awareness by being the first person with ultra-rare Niemann-Pick Type B to run the Boston Marathon.   Please help others who, like me, struggle for many years to obtain a diagnosis.  Hope for treatment begins with a diagnosis!!!

Cassie’s Dad, Wayne Samborski, shared the following update to the NPD community; “For those of you that did not know Cassie, she was a pioneer of Niemann-Pick type B. Her disease back when first diagnosed was moving very fast and doctors gave her maybe a few years to live. At that time, she was the first person in the USA to undergo a Bone Marrow Transplant for Niemann-Pick type B. After two tries it finally worked. After a test showed she had the missing enzyme and was cured from Niemann-Pick type B. Her heart, liver, lungs and kidney paid a price and did get damaged but she made it 21 years instead of 5 years.”  Please visit NNPDF.ORG to learn more about this disease.

National Organization for Rare Disorders, Inc. wrote - Marathon runners and rare disease community members team up to support all 7,000 rare diseases and help undiagnosed patients find answers. The funds raised for NORD will support the NORD NIH Undiagnosed Diseases Program (UDP). As many rare disease patients must endure a long odyssey before finally receiving an accurate diagnosis, the entire Running for Rare Diseases team is passionate about enabling early diagnosis for those living with mysterious, rare conditions.

$5,000

MONEY RAISED
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  • Jan & Sue

    $100

  • Mary Markman

    $100

  • Michele and John

    $100

  • Mom & Dad

    $50

  • Tammy Ingwersen

    $100

  • Preston Edelstein

    $25

  • Barking Dog Ukuleles

    $100

  • Mike and Janet Tuttle

     

  • Anonymous

    $2,225

  • Mom and Dad

    $100

  • Anonymous

    $100

  • Candy & Wayne Samborski

    $100

  • Debbie, Joe, Andrea, Genna, Sarah Vavrus

    $100

  • Joe, Chris and Angelika Dalmaso

    $50

  • Rita & George Smith

    $100

  • Betty C.

    $75

  • Denise Cherne

    $50

  • Mary

    $250

  • Anonymous

    $100

  • Janet, Brian, & Samantha

    $100

  • Aunt Linda &uncle; Mac !

    $25

  • Sandy Cowie

    $100

  • Don Bach

    $25

  • Anne O'Connor Smith

    $100

  • Lauriemguzzi@gmail

    $25

  • Melissa Wasserstein

    $100

  • The O'Connor Family

    $25

  • Rob & Karin

    $100

  • Virginia Connolly

    $25

  • Michelle and Fred

    $50

  • Anonymous

    $100

  • Terry McGuinness

    $25

  • Frank Webbe

    $100

  • Missy Green

    $100

  • Praveen Bahadduri

    $25

  • Paul Driscoll

    $25

  • Mom and Dad

    $100

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100% Raised of $5,000 Goal

The Team: $87,725 TOTAL RAISED SO FAR

Fundraiser Title

Carolyn Ball

Amount Raised

$7,624

 

152% Raised of $5,000 Goal

Fundraiser Title

Justin Hopkin

Amount Raised

$7,222

 

144% Raised of $5,000 Goal

Fundraiser Title

Maureen McLaughlin

Amount Raised

$6,860

 

137% Raised of $5,000 Goal

Fundraiser Title

Kyriakos Economides

Amount Raised

$6,382

 

128% Raised of $5,000 Goal

Fundraiser Title

Lora Moore

Amount Raised

$6,344

 

127% Raised of $5,000 Goal

Fundraiser Title

Sarah Batchelder

Amount Raised

$6,175

 

124% Raised of $5,000 Goal

Fundraiser Title

Sarah Yang

Amount Raised

$5,887

 

118% Raised of $5,000 Goal

Fundraiser Title

Martha Stapels

Amount Raised

$5,885

 

118% Raised of $5,000 Goal

Donor Comments

Mom and Dad

Mom and Dad

DONATION: $100

2 years ago

Paul Driscoll

Paul Driscoll

DONATION: $25

2 years ago

Praveen Bahadduri

Praveen Bahadduri

DONATION: $25

Ironman backpack winner! 2 years ago

Missy Green

Missy Green

DONATION: $100

2 years ago

Frank Webbe

Frank Webbe

DONATION: $100

Proud of you Anne. 2 years ago

Terry McGuinness

Terry McGuinness

DONATION: $25

Yasmin Markman 2 years ago

Anonymous

ANONYMOUS

DONATION: $100

2 years ago

Michelle and Fred

Michelle and Fred

DONATION: $50

2 years ago

Virginia Connolly

Virginia Connolly

DONATION: $25

2 years ago

Rob & Karin

Rob & Karin

DONATION: $100

Congratulations Anne! You are one amazing and driven friend! 2 years ago