Our Search for Answers

At the heart of our mission is to support and promote research toward treatment and cure of scleroderma, Degos disease, and other related disorders. There are potential overlaps found in individuals with scleroderma, Degos disease, dermatomyositis, and lupus. The Steffens Scleroderma Foundation actively supports research to uncover vascular similarities among these conditions in collaboration with:

• The National Institutes of Health
• Researchers in Europe and Canada

Research findings to date are being applied to evidence-based practice to help physicians make informed patient care decisions. Read some of the medical publications and abstracts  that are adding to the body of knowledge related to scleroderma and Degos disease.

Current Projects ongoing in 2021

Steffens Scleroderma Research Foundation has current research collaborations with Albany Medical College, Albany College of Pharmacy and Health Sciences, Russell Sage Colleges, College of St. Rose, and most recently, the School of BioMedical Engineering at Rensselaer Polytechnic Institute.

With all the ensuing 2021 projects, we are delighted to welcome Hannah Bowen, a much-needed research assistant, to our team. Ms. Bowen is working in direct support of Dr. Shapiro. In addition, she is currently working on her masters in Translational Biomedical Research, and is researching treatment for the COVID-19 virus. Other professionals involved with Steffens in 2021 are Patricia Fennell, MSW, LCSW-R, of Albany Health Management Associates, Inc and Nancy Dorr, PhD, Professor of Psychology at the College of Saint Rose. Along with Dr. Lee Shapiro, they conducted a study examining how the COVID–19 pandemic may be affecting the health and wellness of people with Scleroderma. Please go to www.albanyhealthmanagement.com for further information and resources.

Dr. Swati Mehta, Associate Professor at Albany Medical College, is currently researching late onset renal crisis in Scleroderma. She and Dr. Shapiro are studying patients that develop renal crisis within the initial five years of having Scleroderma, and those that develop renal crisis after five years with the disease. The goal is to study differences in clinical characteristics, outcomes, and overall mortality from this complication. In addition, the potential correlation of socio-demographics, race, and ethnicity will be evaluated and explored. This is a large multicenter research endeavor. Dr. Robyn Domsic of UPMC & University of Pittsburgh, Arthritis and Autoimmunity Center, Dr. Laura Hummers of Johns Hopkins Scleroderma Center, and Dr. Virginia Steen of Georgetown University Hospital, along with medical students are all participants in the research.

Dr. Patrick Whelan is a Pediatric Rheumatologist at UCLA who collaborates with Dr. Shapiro on Degos research. He encountered his first pediatric Degos patient in 2005, writing about his experiences in the New England Journal of Medicine that same year. This experience led to his continued treatment, research, and advocacy for awareness of Degos Disease in the medical community. He personally met with Ernie DuPont, Jr. and his parents, Ernie and Sue DuPont, to better understand the effects of the progression of this disease in the pediatric population. Dr. Whelan has observed the occurrence of strokes in the pediatric Degos Disease population, and is currently studying this complication. Dr. Whelan has also noted significant similarities between vascular disease in COVID-19 and vascular pathology seen in Degos patients. At a recent conference of medical professionals, Dr. Whalen encouraged his colleagues to look at this similarity, “Degos disease can be a window into what is happening in COVID, and COVID can be a window into what is happening with Degos.” For more information about Ernie DuPont’s battle with Degos Disease, visit our Patients Stories page on our website.

“Our focus is on Scleroderma and Degos Disease. Both have small vessel changes that lead to many of the effects of these diseases. In Scleroderma, we look at the vascular aspects of the disease in particular research into kidney disease, into calcinosis (calcium deposition) and gastro-intenstinal Scleroderma, which we believe and are trying to prove is related to vascular changes. For Degos Disease, we are trying to fill a void by developing effective means for quickly diagnosing, of treating and obtaining access to treatement for the disease,” Dr. Lee Shapiro. We have become a leader in Scleroderma focused Interprofessional Education, which has raised awareness of the disease. We have become the global beacon of hope for individuals with Degos disease.

Degos Disease Research Centers

• Scleroderma Center, Albany Med, Division of Rheumatology, Malta, NewYork
• Städtisches Klinikum, Dessau, Germany
• National Institutes of Health, National Heart, Lung, and Blood Institute, Bethesda, Maryland