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Mary Kitlowski's Fundraiser:

Running for Rare - NYC Marathon 2017

Mary's Photo
Mary's Photo
Mary Kitlowski

THE STORY:

I was diagnosed with a rare disease called Primary Ciliary Dyskinesia (PCD) when I was 17.  PCD mostly affects my lungs and sinuses.  I have 40% lung capacity and I have to wear oxygen when I race.  I'm not fast, but I'm determined.  I have participated in multiple races in different states and two countries to help raise awareness of rare diseases, lung diseases, PCD and oxygen needs.  New York will be my first marathon.


My parents started taking me to specialists when I was three.  They also took my sister, who is four years younger and also has PCD (and had a double lung transplant in 2014).  As many with rare diseases know, it can take a long time to get the proper diagnosis and misdiagnosis is all too common.  There are only about 2,000 PCD diagnosis in north america.  About half of those with PCD have partial or total organ reversal.  For example, their heart might be on the right side instead of the left.  


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.


If you would prefer to send a check make it out to the "National Organization for Rare Disorders" or "NORD", please put "Running for Rare - NY Marathon - Kitlowski" in the memo so they can properly credit the check here.  Then mail it to:

National Organization for Rare Disorders

1900 Crown Colony Drive, Suite 310

Quincy, MA 02169

$3,000

MONEY RAISED
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  • Lisa and Charles

     

  • Sherri Zimmerman

    $100

  • Katie Miller

    $50

  • Ruby Antonetti

    $250

  • Sue and Avery Dover

     

  • Anonymous

     

  • Laura Cauthen

    $250

  • Gloria Jacobs

     

  • Jennifer Carnahan

    $50

  • Leslie Evanisko

    $150

  • Lynn Ehrne

    $10

  • Sid M.

    $20

  • Nancy Behram

    $50

  • Dolores Dubowski

    $50

  • Elizabeth

    $100

  • Heidi Vause

     

  • Eloise E

     

  • Therese and Jeff Odell

    $100

  • Anonymous

    $100

  • Dorothy Heinlen

    $50

  • Anonymous

     

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100% Raised of $3,000 Goal

The Team: $34,257 TOTAL RAISED SO FAR

Fundraiser Title

trish pickford

Amount Raised

$4,735

 

158% Raised of $3,000 Goal

Fundraiser Title

Jessica Chambers

Amount Raised

$3,376

 

113% Raised of $3,000 Goal

Fundraiser Title

Ross Martin

Amount Raised

$3,055

 

102% Raised of $3,000 Goal

Fundraiser Title

Brittany Hoffmann

Amount Raised

$3,015

 

101% Raised of $3,000 Goal

Fundraiser Title

Mary Kitlowski

Amount Raised

$3,000

 

100% Raised of $3,000 Goal

Fundraiser Title

Jeremy Irons

Amount Raised

$3,000

 

100% Raised of $3,000 Goal

Fundraiser Title

Tammy Lively Thomas

Amount Raised

$3,000

 

100% Raised of $3,000 Goal

Fundraiser Title

Mike Smith

Amount Raised

$3,000

 

100% Raised of $3,000 Goal

Donor Comments

Anonymous

ANONYMOUS

6 months ago

Dorothy Heinlen

Dorothy Heinlen

DONATION: $50

Tribute to Mary Kitlowski and her extraordinary courage. 7 months ago

Anonymous

ANONYMOUS

DONATION: $100

for my favorite wonder woman 8 months ago

Therese and Jeff Odell

Therese and Jeff Odell

DONATION: $100

In Tribute of Mary Kitlowski 8 months ago

Eloise E

Eloise E

8 months ago

Heidi Vause

Heidi Vause

8 months ago

Elizabeth

Elizabeth

DONATION: $100

8 months ago

Dolores Dubowski

Dolores Dubowski

DONATION: $50

9 months ago

Nancy Behram

Nancy Behram

DONATION: $50

9 months ago

Sid M.

Sid M.

DONATION: $20

9 months ago