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Katie Niemeyer's Fundraiser:

KATIE NIEMEYER’S FUNDRAISER FOR STEVENS-JOHNSON SYNDROME RESEARCH

Katie's Photo
Katie's Photo
Katie's Photo
Katie's Photo
Katie Niemeyer

THE STORY:

What if the medicine to heal you actually hurt you -- leaving you scarred, possibly blind or even, dead?

When I was 16, my body reacted to a new medication with familiar, seemingly benign allergic and cold-like symptoms – scratchy throat, itchy eyes, then a rash. Within days, I lay in a burn unit at Barnes Jewish Hospital, covered in second and third degree burns, a condition known as Stevens-Johnsons syndrome (SJS), which is caused by an adverse reaction to common medications. Over 200 drugs -- both OTC and RX -- have been identified as triggers for SJS, and the more severe form of the disease Toxic Epidermal Necrolysis (TEN), and these are familiar, oft-prescribed medications, e.g., allopurinol, NSAIDs, sulfonamide antibiotics, and anticonvulsants. I spent three weeks in the burn unit, fully bandaged, but conscious, as doctors and nurses gave me their best care and attention to stop the reaction, manage my pain and care for my burns, thus allowing my body to heal.

Doctors credit my youth for my survival. Surviving SJS-TEN gave me the inspiration to pursue a career in nursing including a graduate degree in anesthesiology. Yet SJS-TEN survivors live with many scars, both physical and mental. We work to overcome them and put them behind us. My eyes are highly sensitive and can be a source of excruciating pain, especially while exercising. Nonetheless, I am one of the fortunate survivors who is alive and can still see. Sadly, more than 25% of patients with TEN don’t survive; many who do are permanently blind.

In the last five years, I have begun visiting SJS-TEN patients in the hospital, talking to them and to their families to offer support and encouragement. One of the most devastating side effects of the disease is the loss of normal vision and even complete blindness. I began looking for researchers who care about the treatment of these patients. When I read about the work of Harvard Medical School doctors James Chodosh and Hajirah Saeed at Mass. Eye and Ear in Boston I knew that I could help them to make a difference.

In 2016, my family made our first major gift to help fund SJS-TEN research at Mass. Eye and Ear, where Drs. Chodosh and Saeed are launching a multi-institutional collaboration to advance research aimed at improving prevention, diagnosis and treatment. Creation of a national patient SJS-TEN database and bio-repository will fuel their research to help understand the disease pathology with the ultimate goal of developing an early diagnostic test for SJS-TEN and identification of at-risk patients before they take suspect drugs. They also aim to evaluate the efficacy of current treatments and develop more effective treatments to ensure fewer long-term complications of the disease.

To improve treatment for SJS-TEN patients, my family and I have established the Katie Niemeyer Research Fund at Mass. Eye and Ear.  Our goal is to raise $100,000 to help the doctors and scientists understand SJS-TEN so that other people will not have to endure the painful experience that I did.

Please consider making a gift in support of this important research.

In August 2016, we will honor SJS Awareness Month.

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Questions? Please contact me at katie@myhandana.com.

DONATE

To This Fundraiser

$4,580

MONEY RAISED
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  • Melissa Paul

    $100

  • Handana

    $500

  • The McClellans

    $500

  • Robert and Sherrie Frachtman

    $180

  • Chad Long

    $250

  • Anonymous

     

  • Elizabeth Klaimy

    $50

  • Laurel & John Niemeyer

    $100

  • Kevin & Michelle Dahlstrand

     

  • Jim & Dick

    $100

  • Greg Guest

    $200

  • Drs. Ashley Gordon & Vincent Cavaretta

    $1,000

  • CSI Executive Search

     

  • Sara L. Morris

    $50

  • Anonymous

     

  • Anonymous

    $13

  • SJS Awareness Louisiana

    $500

  • Karen and Karl Smith

    $500

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5% Raised of $100,000 Goal

Fundraise for this Campaign

The Team: $4,580 TOTAL RAISED SO FAR

JOIN THE TEAM

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Donor Comments

Karen and Karl Smith

Karen and Karl Smith

DONATION: $500

1 month ago

SJS Awareness Louisiana

SJS Awareness Louisiana

DONATION: $500

Thank you so much for your support in our mission to spread SJS Awareness and for the research that is desperately needed. 8 months ago

Anonymous

ANONYMOUS

DONATION: $13

Event Test 8 months ago

Anonymous

ANONYMOUS

8 months ago

Sara L. Morris

Sara L. Morris

DONATION: $50

8 months ago

CSI Executive Search

CSI Executive Search

In support of the need to find solutions for SJS. 9 months ago

Drs. Ashley Gordon & Vincent Cavaretta

Drs. Ashley Gordon & Vincent Cavaretta

DONATION: $1,000

9 months ago

Greg Guest

Greg Guest

DONATION: $200

Keep up the amazing work Katie! 9 months ago

Jim & Dick

Jim & Dick

DONATION: $100

In Honor of Katie Niemeyer for Her Courage and Insight 9 months ago

Kevin & Michelle Dahlstrand

Kevin & Michelle Dahlstrand

9 months ago