Skip to content
amiestowe's profile image - click for profile

Amie stowe's Fundraiser:

Running for Rare-Boston Marathon 2017

Amie's Photo
Amie's Photo
Amie's Photo
 

Raising awareness about Rothmund-Thomson Syndrome.
February 22, 2017

Welcome to my fundraising page for Running for Rare for the Boston Marathon 2017.  While i  am thrilled to be a part of this great team, I  See more
Amie stowe

THE STORY:

National Organization for Rare Disorders, Inc. wrote -

For the tenth consecutive year, patients and advocates will run as members of the Running for Rare Diseases Marathon Team in support of the National Organization for Rare Disorders (NORD).  NORD is dedicated to supporting individuals and families impacted by rare disease and the organizations that serve them through programs of education, advocacy, research and financial assistance services.  Rare diseases impact the lives of 30 million Americans – two-thirds of whom are children.  On average, it can take a patient 5-7 years to receive an accurate diagnosis, at which time 95% will be told there is no FDA approved treatment or ongoing research to learn more about their disease.  The funds raised from the Running for Rare Diseases Team will support NORD’s Undiagnosed Diseases Program; helping individuals to receive a diagnosis from the National Institutes of Health (NIH). Donations in support of this campaign will be tax-deductible to the extent permitted by law.  For eight consecutive years, NORD has received the top (4-Star) rating from Charity Navigator, a leading independent evaluator of charities. The individuals and families helped by NORD often have nowhere else to turn for assistance.  Your support of this campaign is very important to them.  

$5,575

MONEY RAISED
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  • Jill H.

    $100

  • Anonymous

     

  • Sara Coe

    $100

  • Judi Donnelly

     

  • Sue Banville Vorchheimer

    $50

  • Janet Perkins Howland

    $50

  • Merere & Pepere

    $100

  • Lena

     

  • Anonymous

     

  • Diane Philie

     

  • David Weisman

     

  • Karen and Jan :)

    $15

  • Manning

     

  • Jennifer Westberg

    $50

  • Jen Spina

     

  • Janet Robinson

    $50

  • Stephanie Rogers

     

  • Michael Forrest

     

  • Chelsea Fisher

    $25

  • Lexibakes

     

  • Melanie Fried

     

  • Dana Betts (Harkin)

    $40

  • Lori Baldwin

     

  • Katie Trosen

    $25

  • Andrea Conley

     

  • amie stowe

    $2,200

  • Sanofi Genzyme Matching Gift

    $1,700

  • Sanofi Genzyme Matching Gift

    $500

  •  
  •  
  •  
 

112% Raised of $5,000 Goal

The Team: $75,317 TOTAL RAISED SO FAR

Fundraiser Title

Patrick Jones

Amount Raised

$8,585

 

172% Raised of $5,000 Goal

Fundraiser Title

Becca Bednarz

Amount Raised

$6,585

 

132% Raised of $5,000 Goal

Fundraiser Title

Orion Martin

Amount Raised

$6,522

 

130% Raised of $5,000 Goal

Fundraiser Title

Amanda Foisy

Amount Raised

$6,396

 

128% Raised of $5,000 Goal

Fundraiser Title

Kai Hoeffner

Amount Raised

$5,930

 

119% Raised of $5,000 Goal

Fundraiser Title

Roger Maderia

Amount Raised

$5,610

 

112% Raised of $5,000 Goal

Fundraiser Title

Amie stowe

Amount Raised

$5,575

 

112% Raised of $5,000 Goal

Fundraiser Title

Varavani Dwarki

Amount Raised

$5,345

 

107% Raised of $5,000 Goal

Donor Comments

Sanofi Genzyme Matching Gift

Sanofi Genzyme Matching Gift

DONATION: $500

5 months ago

Sanofi Genzyme Matching Gift

Sanofi Genzyme Matching Gift

DONATION: $1,700

5 months ago

amie stowe

amie stowe

DONATION: $2,200

5 months ago

Andrea Conley

Andrea Conley

Have a great race for a great cause! 6 months ago

Katie Trosen

Katie Trosen

DONATION: $25

7 months ago

Lori Baldwin

Lori Baldwin

7 months ago

Dana Betts (Harkin)

Dana Betts (Harkin)

DONATION: $40

7 months ago

Melanie Fried

Melanie Fried

7 months ago

Lexibakes

Lexibakes

you're amazing! run like the wind! 7 months ago

Chelsea Fisher

Chelsea Fisher

DONATION: $25

Amazing what you are doing, Amy on behalf of all the patients we serve and the many that have yet to be diagnosed. Thank you!!! 7 months ago