APRIL 28, 2012: International Symposium on Pathogenesis and Management of Systemic Sclerosis:  An Update

Prof Matucci-Cerinic, Dr. Lafyatis, Dr. Medsger, Dr. Denton, Dr. Schiopu, Dr. Khanna, Dr. Neubig , Dr. Gestwicki, Dr. Fox. Missing from photo: Dr. Clements, Dr. McLaughlin

Internationally renowned scleroderma experts presented a daylong symposium on the pathogenesis, diagnosis and treatment of scleroderma and related issues on Saturday, April 28 at the University of Michigan.  The program was sponsored by the University of Michigan Division of Rheumatology and the University of Michigan Scleroderma Program.

Physicians, nurses and other health-care professionals attended.  The University of Michigan Medical School designated this live activity for a maximum of 5.5 AMA PRA Category 1 Credits™.

The symposium was held in the Danto Auditorium in the University of Michigan Cardiovascular Center, 1500 E. Medical Center Drive, Ann Arbor.

Presenters included: 
Dinesh Khanna, MD, MSc, Marvin & Betty Danto Research Professor, Associate Professor of Medicine,  Director, Scleroderma Program, University of Michigan

Christopher Denton, PhD, FRCP, Professor of Experimental Rheumatology,University College London, UK

Marco Matucci-Cerinic, MD, PhD, Professor of Rheumatology and Medicine, University of Florence, Italy

Philip Clements, MD, Professor Emeritus of Medicine, Division of Rheumatology, UCLA

Robert Lafyatis, MD, Professor of Medicine and Laboratory Director, Boston University Medical Center

Vallerie McLaughlin, MD, Professor of Medicine, Director, Pulmonary Hypertension Program, University of Michigan   

Thomas Medsger, Jr, MD, Gerald P. Rodnan Professor of Medicine, Director, Scleroderma Research Program, University of Pittsburgh School of Medicine

Elena Schiopu, MD, Assistant Professor of Medicine, Scleroderma Program, University of Michigan

Jason E. Gestwicki, PhD, Associate Professor, William B. Pratt Collegiate Professor, Departments of Pathology and Biological Chemistry, Director, Center for Chemical Genomics, The Life Sciences Institute, University of Michigan

In addition to case discussions, the program covered the following topics:

• Early diagnosis of systemic sclerosis
• Systemic sclerosis and interstitial lung disease
• GI involvement
• Pathogenesis of systemic sclerosis
• Vasculopathy in systemic sclerosis and management of Raynaud’s phenomenon and digital ulcers
• How do I manage patients with scleroderma?
• Biomarkers in scleroderma:  Are they ready for trials and clinical practice?
• Scleroderma and pulmonary hypertension:  Why rheumatologists need to be aware of this serious complication
• Role of autoantibodies in scleroderma: its relevance in clinical practice
• Basics of academic drug discovery

***Cancelled***Scleroderma Golf Classic and Patient Education Workshop (June 15th)

There are many ways you can support the Scleroderma Program!   If you are interested in hosting a fundraising event to benefit the program, would like to learn more about major/lead gift opportunities or wish to visit U-M for a personal tour of the labs where research is being performed, please contact Lori Hirshman in the Office of Development for the Department of Internal Medicine at hirshmal@umich.edu or 734-763-6080.

Save the Date:  Sunday, June 24 – Stepping Out Across Michigan to Cure Scleroderma – Family Adventure Day
Participate in a 5K Run through historic Huntington Woods or a 2 mile walk through the Detroit Zoo in Royal Oak – Proceeds benefit the Scleroderma Foundation – Michigan Chapter.  To register or for more information, go to http://www.scleroderma.org/chapter/michigan/2012walks.shtm 

Save the Date:  Saturday, June 30 – Stepping Out Across Michigan to Cure Scleroderma – Family Adventure Day, Hawk Island Park, Lansing.
Proceeds benefit the Scleroderma Foundation – Michigan Chapter.  To register or for more information, go to http://www.scleroderma.org/chapter/michigan/2012walks.shtm

Leah Kramer, BS, CCRP, Julie Konkle, BSN, RN, CCRP, Terry Thielan, LPN, CCRP, Linda Briggs, PhD, MPT, CCRP, Monika Benedict-Blue, BSW, CCRP, Yvonne Sturt, BHS, CCRP  (missing from photo)

University of Michigan Scleroderma Program Staff Attain Certified Clinical Research Professional Certification (CCRP)

Six University of Michigan Scleroderma Program staff members in the Division of Rheumatology have attained certification as Certified Clinical Research Professionals (CCRP) from the Society of Clinical Research Associates (SoCRA).  SoCRA developed this International Certification Program in order to create an internationally-accepted standard of knowledge, education and experience for clinical research professionals.  The certification program is to promote recognition and continuing excellence in the ethical conduct of clinical trials.

To become certified, individuals must pass a rigorous examination covering five major subject areas including Conduct of Clinical Trials, Institutional Review Boards and Regulations, Ethical Issues, and Abstracting Information from Medical Records.  The exam covers knowledge of the United States Code of Federal Regulations, study design, financial disclosure, protocol development, record retention, adverse events, FDA forms completion, reporting requirements, investigational new drug applications, and ethical codes and doctrines.  Individuals must demonstrate the ability to utilize critical thinking skills in practical applications with regard to clinical trials.

Kudos to the Scleroderma Program Research Team!

“You Gotta Eat!” is a new health and wellness book written by scleroderma patient and Registered Dietitian, Linda Clancy Kaminski.  The light-hearted, yet thought-provoking, diet and exercise advice dispensed throughout the book teaches realistic strategies for making wiser food choices, controlling weight, and offers guidelines for managing and/or preventing chronic diseases such as scleroderma, diabetes, high cholesterol, prostate cancer, and hypertension.  The book also includes a chapter entitled, “Healthy Living with Scleroderma”.

An excerpt from the book:

Systemic scleroderma invaded my body over nine years ago, and I have struggled to meet every physical and emotional challenge this savage beast has thrown my way…In my opinion, there is no worse feeling than losing control over your own body.  The unpredictable nature of scleroderma renders you essentially helpless in the face of physical pain, debilitating fatigue, and unceasing emotional turmoil, and has the capacity to steal your quality of life….I decided to take matters into my own hands by embracing the things I could control, such as the adoption of healthy lifestyle habits that would enhance my ability to manage the symptoms and resulting stress. I eventually made peace with my body by treating it well. I now offer you the chance to do the same.

Some topics of interest in the book for scleroderma patients:
            A healthy daily diet for a person living with scleroderma
            Lifestyle changes for specific scleroderma-related issues:

• Reflux/heartburn
• Decreased GI motility and constipation
• Difficulty swallowing
• Excessive weight loss
• Inflammation
• Fatigue
• Poor circulation/Raynaud’s Phenomenon
• Tight, thickened skin
• Joint stiffness
• Compelling reasons to exercise
• How to create an exercise program

To learn more about the book’s content and to order your copy of “You Gotta Eat!”, visit www.thenuttynutritionist.com

October 19, 2011 – Michigan Rheumatism Society Annual Meeting.  Dr. Elena Schiopu, Guest Speaker
Dr. Elena Schiopu, Clinical Assistant Professor in the Scleroderma Program, Division of Rheumatology at the University of Michigan, has been chosen as the guest speaker at the annual Michigan Rheumatism Society Meeting on October 19 at Weber’s Inn in Ann Arbor.  Dr. Schiopu’s talk will focus on the current status of clinical care for systemic sclerosis and current research studies in the Scleroderma Program.

September 3, 2011 – The 5th Annual Greatest 5K Ever, sponsored by the Help Fight Scleroderma Foundation, took place in beautiful Riverside Park in Grand Rapids, Michigan. For the fourth year in a row, proceeds from the event benefited scleroderma research at the University of Michigan.

In addition to the Help Fight Scleroderma Foundation’s 5K Run, there was a Kids Run and a Stroller Division.  The Michigan Chapter of the Scleroderma Foundation also hosted a fundraiser walk Stepping Out Across Michigan to Cure Scleroderma.  Fun festivities of the day included post-race pizza, music, and a raffle for tickets to Michigan, Michigan State, and Notre Dame football games.

Joe Brennan (left) and Drs. Dinesh Khanna and Elena Schiopu with their families

The Help Fight Scleroderma Foundation was created by Joseph Brennan and his family as a means to raise awareness about scleroderma in west Michigan. Please visit Help Fight Scleroderma Foundation for more information.

Dinesh Khanna, MD, MS (left) with Scleroderma Foundation CEO Robert Riggs.  Dr. Khanna was awarded “Doctor of the Year” during the awards banquet.

July 16, 2011 – San Francisco, California:  Dr. Dinesh Khanna is awarded “Doctor of the Year” from the National Scleroderma Foundation. Read the entire press release.

The Scleroderma Foundation named Dinesh Khanna, M.D., M.Sc., its 2011 Doctor of the Year during this year's National Patient Education Conference held last month in San Francisco. The award recognizes a skilled physician or researcher for his or her involvement within the Foundation, and for helping provide guidance and support to the organization's patient population.

New York’s Times Square news bulletin announces award to Dr. Khanna

"Those who know Dr. Khanna as a physician and caretaker know that he is a caring and compassionate doctor who does not lose sight of the fact those patients always come first," said Scleroderma Foundation's CEO Robert J. Riggs. "He is a highly-regarded researcher who is well respected among his peers in the medical community, and his patients also know him as a compassionate physician who always puts their well-being first and foremost."

Dr. Khanna is the Marvin & Betty Danto Research Professor of Connective Tissue Research and Associate Professor of Internal Medicine in the Division of Rheumatology, and the newly-appointed director of the Scleroderma Program at the University of Michigan in Ann Arbor. He previously was the clinical director of the scleroderma clinic at the David Geffen School of Medicine at the University of California at Los Angeles.

Dinesh Khanna, MD, MS

Dinesh Khanna, MD, MS, Marvin & Betty Danto Research Professor of Connective Tissue Research and Associate Professor of Internal Medicine in the Division of Rheumatology, has been appointed as the new director of the University of Michigan Scleroderma Program effective July 1, 2011.

Originally from New Delhi, India, Dr. Khanna received his medical degree from the University College of Medical Sciences.  He completed postdoctoral training as an intern and resident in internal medicine at Wright State University School of Medicine in Dayton, Ohio, and a clinical and research fellowship in rheumatology and a master’s in clinical research at the University of California at Los Angeles School of Medicine.  Dr. Khanna most recently was Assistant Professor of Medicine at the David Geffen School of Medicine at UCLA.  He was also Clinical Director of UCLA’s Scleroderma Clinic.

Dr. Khanna is the author of over 110 peer-reviewed publications and book chapters.  He has won numerous awards, including the 2007 Spirit of Leadership Award and the 2011 “Best Doctor of the Year” award from the Scleroderma Foundation.  He is board certified in rheumatology.  Dr. Khanna is currently funded by the National Institutes of Health and is particularly interested in the design of clinical trials and assessing patient reported outcomes in patients with scleroderma.

Dr. Khanna is a fellow of the American College of Rheumatology and the American College of Physicians.

Mr. and Mrs. Joseph Clancy

January 2011 – The Scleroderma Program received a fourth gift of $20,000 from The Clancy Family Foundation of Farmington Hills, Michigan for scleroderma research at the University of Michigan.

This gift allows the continuation of several novel scleroderma research studies that would not be possible without these types of gifts. The Clancy Family Foundation’s continued partnership and support of scleroderma research is very much appreciated. 

November 21, 2010 – The 9th Annual Pulmonary Hypertension Awareness Luncheon and Conference was held at the Sheraton Detroit Novi Hotel, Novi, Michigan

The Pulmonary Hypertension Awareness luncheon and conference provided a great opportunity for scleroderma patients to meet and share their experiences and hear talks from physicians within the Michigan Pulmonary Hypertension community.  Featured speakers were Dr. Elena Schiopu from the University of Michigan Scleroderma Program, Dr. Vallerie McLaughlin from the University of Michigan Pulmonary Hypertension Program, and Dr. Hector Cajigas from Henry Ford Hospital’s Pulmonary Hypertension Program.  To find a PH Support Group near you, visit Pulmonary Hypertension Association.

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