I am an SJS-TENS survivor, and 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.
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