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Tammy Lively Thomas' Fundraiser:

Running for Rare - NYC Marathon 2017

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Tammy Lively Thomas

THE STORY:

On November 5th I will be running the New York City Marathon to raise money and awareness for the National Organization for Rare Disorders. I will also be running in honor of an amazing young man whom I am very fortunate to parnter with for this cause. Although this will be my 11th marathon, it is my first after being dianosed with Vascular Ehlers Danlos Syndrome. Vascular EDS is an inherited connective tissue disorder that causes aneurysms, arterial disscstions and ruptures, as well as spontaneous organ rupture. I was blessed to have the resources to seek out some of the best doctors at one of the greatest hospitals in the world for diagnosis and treatment. Not all in the rare community have those same resources. I will be running to raise money for NORD's undiagnosed disease program. Like myself, most patients diagnosed with rare diseases are told there are no FDA approved treatments for their disease. The words I hear so frequently from my doctors are "I don't know" and "There is no research". Please support me in my effort make a difference.

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

$225

MONEY RAISED
  • Sarah and Channing

    $25

  • Marilyn & Bernie Mason

    $100

  • Zach, Leslie, Jackson, and Adam

    $100

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8% Raised of $3,000 Goal

Fundraise for this Campaign

The Team: $12,607 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

trish pickford

Amount Raised

$4,635

 

155% Raised of $3,000 Goal

Fundraiser Title

Mary Kitlowski

Amount Raised

$2,255

 

75% Raised of $3,000 Goal

Fundraiser Title

Jessica Chambers

Amount Raised

$1,901

 

63% Raised of $3,000 Goal

Fundraiser Title

Stuart Fisher

Amount Raised

$1,066

Fundraiser Title

Ross Martin

Amount Raised

$920

 

31% Raised of $3,000 Goal

Fundraiser Title

Brittany Hoffmann

Amount Raised

$870

 

29% Raised of $3,000 Goal

Fundraiser Title

Jeremy Irons

Amount Raised

$395

 

13% Raised of $3,000 Goal

Fundraiser Title

Tammy Lively Thomas

Amount Raised

$225

 

8% Raised of $3,000 Goal

Donor Comments

Zach, Leslie, Jackson, and Adam

Zach, Leslie, Jackson, and Adam

DONATION: $100

We love you Tammy!!! 2 months ago

Marilyn & Bernie Mason

Marilyn & Bernie Mason

DONATION: $100

Hope you far exceed your goal!!! 2 months ago

Sarah and Channing

Sarah and Channing

DONATION: $25

Proud of what you're doing! :) 2 months ago