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Scleroderma Foundation
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eLetter #719 | July 7, 2017  

Unraveling the Mystery of Juvenile Scleroderma

Dr. TorokKathryn Torok, M.D. is a researcher dedicated to improving the quality of life for children living with scleroderma. As Assistant Professor of Pediatric Rheumatology at the Children’s Hospital of Pittsburgh at UPMC, she says her daily inspiration comes from each young patient she sees who has the “strength and drive to just be a kid.”

“The opportunity to impact someone’s life so early and the remarkable recovery that children have, in general, to even some of the most serious diseases once correct diagnosis and intervention were applied were alluring to me,” Dr. Torok says.

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Pain ConsortiumNIH Pain Consortium

The National Institutes of Health (NIH) Pain Consortium helps to develop comprehensive pain research among the many different NIH Institutes and Centers. It looks to identify key opportunities in pain research and increase the visibility of this type of research through collaborations with various pain advocacy and patient groups. You can also search through a comprehensive library of pain topics on the Consortium's website.

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$10 Million DNA Sequencing Project Aims to Understand Lung Diseases Better

DNAThe McDonnell Genome Institute at Washington University School of Medicine has received $10 million from the National Heart, Lung and Blood Institute (NHLBI) to look at the DNA sequencing of people from diverse ethnic backgrounds to identify the genetic origins of lung disorders, such as chronic obstructive pulmonary disease and pulmonary embolism.

“With this program, we are including many people with other racial and ethnic backgrounds. Increasing the diversity of the groups being sequenced is important in understanding how genetic variations influence disease risk,” said principal investigator Susan K. Dutcher, Ph.D., a professor of genetics and the interim director of the Institute.

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Systemic Sclerosis and Breast Cancer

Breast CancerResearchers at Cleveland Clinic are looking into the the correlation between the onset of systemic sclerosis and breast cancer. Current conflicting research reports show an increased incidence where other research fails to show an increase.

Led by Soumya Chatterjee, M.D., M.S., researchers are analyzing the relationship between breast cancer and scleroderma in patients who were seen at Cleveland Clinic between January 2006 and May 2016. They compared 51 scleroderma patients who developed breast cancer with 102 patients who only had breast cancer. Patients with mixed connective tissue disease or scleroderma-myositis overlap were excluded from the study.

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National Conference is Almost Here!

There are just two weeks until the 2017 National Patient Education Conference in Arizona. You can still register to join us. Keynote speakers are Andrew Botieri and Karen Vasquez. Both are scleroderma patients and advocates that will inspire you.

Visit to learn more and register today!

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Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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