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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.

DONATE

To This Fundraiser

$650

MONEY RAISED
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  • Lisa and Charles

     

  • Sherri Zimmerman

    $100

  • Katie Miller

    $50

  • Ruby Antonetti

    $250

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22% Raised of $3,000 Goal

Fundraise for this Campaign

The Team: $870 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Mary Kitlowski

Amount Raised

$650

 

22% Raised of $3,000 Goal

Fundraiser Title

trish pickford

Amount Raised

$150

 

5% Raised of $3,000 Goal

Fundraiser Title

Ross Martin

Amount Raised

$50

 

2% Raised of $3,000 Goal

Fundraiser Title

Jeremy Irons

Amount Raised

$20

 

1% Raised of $3,000 Goal

Fundraiser Title

Brittany Hoffmann

Amount Raised

$0

 

0% Raised of $3,000 Goal

Fundraiser Title

Tammy Lively Thomas

Amount Raised

$0

 

0% Raised of $3,000 Goal

Donor Comments

Ruby Antonetti

Ruby Antonetti

DONATION: $250

2 weeks ago

Katie Miller

Katie Miller

DONATION: $50

Enjoy The Run Mary Rose!! 2 weeks ago

Sherri Zimmerman

Sherri Zimmerman

DONATION: $100

2 weeks ago

Lisa and Charles

Lisa and Charles

2 weeks ago