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News Archive

October 25, 2013

U-M Scleroderma director takes lead role in new guidelines for screening for PAH in Systemic Sclerosis


October 3, 2013

CONSENSUS GUIDELINES PUBLISHED ON SCREENING FOR PAH IN SYSTEMIC SCLEROSIS; RECOMMENDATIONS AIM FOR EARLIER DIAGNOSIS OF THIS LEADING CAUSE OF MORTALITY

All patients with systemic sclerosis (SSc) and connective tissue diseases should be screened for pulmonary arterial hypertension (PAH), an international panel of experts recommended in an article published in the September issue of the journal Arthritis & Rheumatism.  The recommendations, part of a larger effort to improve patient outcomes by diagnosing earlier, identify specific tests to be performed in screening these patients for PAH.

PAH is a rare, chronic and progressive lung disease, often difficult to diagnose.  PAH affects up to 15 percent of those with CTD and is the leading cause of mortality among them. SSc, or scleroderma, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. Both are complicated conditions.

The article was the result of a literature review and consensus process by CTD and PAH experts from the United States, Canada and the European Union. The panel was convened by the Pulmonary Hypertension Association (PHA) and the Scleroderma Foundation, Inc.
The article, “Recommendations for Screening and Detection of Connective-Tissue Disease Associated Pulmonary Arterial Hypertension,” recommended the following initial screening evaluation of CTD patients:

•             Pulmonary function test (PFT) including diffusion capacity carbon monoxide (DLCO)
•             Transthoracic echocardiogram (TTE)
•             N-terminal pro b-type natriuretic peptide (NT-Pro BNP)

The recommendations also called for annual TTE and PFT in SSc and spectrum disorders and for the full screening panel to be performed as soon as any new signs or symptoms are present.

An abstract of the journal article can be read here: http://www.ncbi.nlm.nih.gov/pubmed/24022584
These recommendations are the first to provide such specific guidelines that are evidence-driven and consensus-based, said the article’s co-principal investigator, Dinesh Khanna, M.D., of the University of Michigan in Ann Arbor.  “Earlier recommendations that were developed as part of larger efforts in PAH did not provide detailed recommendations for patients with CTD-PAH.  Hence, our efforts to develop these recommendations for screening and early detection of CTD-associated PAH,” said Khanna.

PHA’s President and CEO, Rino Aldrighetti, said, “Our goal was to bring renowned clinicians and researchers together to collaborate on these guidelines, taking into consideration different screening and diagnosis practices internationally.”  

Robert Riggs, CEO of the Scleroderma Foundation, said “Scleroderma is among the most complex of connective tissue diseases. The Scleroderma Foundation, PHA and the medical experts involved in this project agree that these guidelines will arm the medical community with a unified approach to caring for patients living with these complicated conditions.”

PHA has made earlier diagnosis a high priority now that multiple treatments are available for PH and additional treatments are undergoing review by the Food and Drug Administration. The Scleroderma Foundation is one of 33 organizations around the world who endorse PHA’s Sometimes its PH early diagnosis campaign (www.SometimesItsPH.org)

 

Funding for the consensus process was provided to the Scleroderma Foundation and PHA by Actelion Pharmaceuticals, US, Inc.; Gilead Sciences, and United Therapeutics Corporation, through unrestricted medical education grants. Dr. Khanna was also supported by a grant from NIH/NIAMS.
 
About The Pulmonary Hypertension Association (PHA)

Headquartered in Silver Spring, Md., PHA is the country’s leading organization connecting pulmonary hypertension patients, families, and medical professionals. Its mission is to find ways to prevent and cure pulmonary hypertension and provide hope for the community through support, education, research, advocacy and awareness. PHA provides free access to information on its Web site about pulmonary hypertension and facilitates over 200 support groups around the nation, helping many of the estimated 30,000 diagnosed patients in the U.S. To learn more, visit: www.PHAssociation.org

About The Scleroderma Foundation

The Massachusetts-based Scleroderma Foundation is the world’s largest nonprofit organization focused on the autoimmune disease scleroderma (a.k.a. systemic sclerosis).  It has a three-fold mission to provide patient education services, generate greater awareness of the disease, and to fund medical research to find the cause, better treatments, and a cure.  The Foundation’s national network of 24 chapters and more than 160 active support groups connect patients, families and the medical community, and serves to advance the Foundation’s mission to the 300,000 people living in the United States with the disease.  For more information about scleroderma and the Scleroderma Foundation, visit:  www.scleroderma.org

 

Contact:
Christina Relacion, Communications Manager, Scleroderma Foundation
(800) 722-4673, Ext. 243
CRelacion@Scleroderma.org

Mollie Katz, VP for Community Engagement, Pulmonary Hypertension Association
(301) 565-3004 x774 or (240) 330-5638
MollieK@PHAssociation.org

 


October 2013

NEW SCLERODERMA CLASSIFICATION CRITERIA PUBLISHED BY ACE/ EULAR. Dr. Khanna participated and played a pivotal role in developing this criteria. The criteria can be accessed using the following link

2013_ACR-EULAR_SSc_Classification_Criteria.pdf


August 2013

Dr Khanna was invited to Hamilton, New Zealand to present at their annual rheumatology meeting. Dr. Khanna discussed the latest evidence in the management of pulmonary arterial hypertension and other topics on diagnosis and management of scleroderma. 


June 2013

Dr. Khanna presented the first recommendations for screening and diagnosis of connective tissue disease-associated pulmonary arterial hypertension at the annual EULAR meeting in Madrid, Spain. Please click here to view the Congress newsletter for more details. 


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

 

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:

Description: NVVKRZMGTAPNSystemic 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


Description: NVVKRZMGTAPNOctober 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.

September 4, 2010 – The 4th Annual Greatest 5K Ever, sponsored by the Help Fight Scleroderma Foundation, took place in beautiful Riverside Park in Grand Rapids, Michigan. For the third year in a row, proceeds from the event benefited scleroderma research at the University of Michigan.

Over 300 participants enjoyed the cool weather and a post-race party with live music, food and beverages.  In addition to the 5K run, there was a stroller division and a walker’s course.  Cash prizes were awarded and football tickets to Michigan State University, University of Michigan and Notre Dame games were raffled off.

The Help Fight Scleroderma Foundation was created by the Brennan Family as a means to raise awareness about scleroderma in western Michigan. Please visit Help Fight Scleroderma Foundation for more information.

 

 

 

 

 


July 28, 2010 New York Times – Listen to the personal stories and view the photos of a collected group of individuals who share their struggles with scleroderma in this informative, interactive New York Times Patient Voices Health Report web article entitled “The Voices of Scleroderma”

The stories include a basketball player who began developing ulcers on his fingers, a young mother whose hands were frozen by the disease, and a mailman who, after losing his range of motion, decided to use his illness as an opportunity to get a college degree and spend more time with his sons.

 

Erion Moore of Portland, Oregon first noticed ulcers on his fingertips in 2006.  He assumed they formed because he was playing so much basketball.  As time passed and his symptoms grew worse, Mr. Moore was finally diagnosed with scleroderma.

 


June 27, 2010 –  RC Dolner’s 2nd Annual Exotic Car Tour was held in Gladstone, New Jersey to benefit scleroderma research at the University of Michigan.

START YOUR ENGINES!

RC Dolner’s 2nd Annual Exotic Car Tour fundraiser was held in Gladstone, New Jersey on Sunday, June 27.  Proceeds from the event benefited the University of Michigan Linda Dolce Scleroderma Research Fund and the Children of Fallen Soldiers Relief Fund. 

Two hundred of the most exotic cars in the world gathered in Gladstone, New Jersey.  With Jeff Andretti leading the way, cars were driven through scenic townships in New Jersey and New York, and made their way to the West Point Military Academy in New York for a fabulous lunch at the beautiful Thayer Hotel.  The Thayer Hotel is located on the academy grounds, overlooking views of the Hudson River.

RC Dolner LLC, a major New York-based construction company, also hosted this event last year and it was a resounding success.

For more information on the car tour, visit:  RC Dolner


February 2010 - New York Teen Wins First Place at Junior Science and Humanities Symposium for Scleroderma Research Project

Eva  Rajon
See Eva's poster

Dr. Ann Impens, a Research Investigator in the University of Michigan Scleroderma Program, was Eva Rajan's project and research advisor. Last year, the Scleroderma Foundation received a request from New York high school student Evelyn (Eva) Rajan. Eva needed help getting statistics about scleroderma patients for her Intel Science Research project on "The Correlation between Depression Symptoms and Length of Disease in Scleroderma Patients." At Eva's request, the Scleroderma Foundation created an online survey to help Eva gather additional data on the scleroderma population. The survey was distributed to over 9,000 men and women via the Scleroderma Foundation's weekly eLetter. Survey responses were anonymously compiled and sent directly to Eva.

On February 6, 2010, Eva informed the Scleroderma Foundation that she had won first place in the Medicine Category, and 2nd place overall at the Junior Science and Humanities Symposium (JSHS), in Cross River, N.Y. She competed with 340 other students. Eva was very shocked and exclaimed, "I cannot believe I won second place out of 340 people!"

At the competition, Eva presented her findings to three judges who graded her based on her research poster. Many people asked questions about her project and became interested in scleroderma, which pleased her because she wanted to bring awareness to the disease.

Eva wants to personally thank the scleroderma community for its help. She said, "Thanks to the responses I received from my survey, I was able to put together a well-rounded project." Indeed, Eva's project was a strong example of the ways in which students can educate their communities about scleroderma.


Dr. Phillips,
Interim Director

February 2010 – Kristine Phillips, MD, PhD appointed as Interim Director of the University of Michigan Scleroderma Program. A search for a permanent director is underway.

Since 2004, the Scleroderma Program at the University of Michigan has been very active in patient care, and clinical and translational research. A diverse and substantive base of committed philanthropic support, six NIH grants, numerous funded clinical trials, translational laboratory collaborations, an exceptional administrative and research staff and a cadre of promising junior faculty were amassed.  Because of this success, scleroderma research at the University of Michigan will continue to thrive under the leadership of Interim Director Kristine Phillips, MD, PhD.

Dr. Phillips has been very active in both patient care and clinical research at the University of Michigan.  She has a background in microvascular and immunology research with a PhD in Physiology.  Following medical school and residency at Johns Hopkins Hospital, she completed a rheumatology and research fellowship at Brigham and Women’s Hospital.  After her fellowship she was Associate Physician at Brigham and Women’s Hospital and Harvard Medical School before joining the University of Michigan in 2005 as an Assistant Professor of Medicine. She has served as Principal Investigator (PI) or co-Investigator on University and NIH-funded grants, including PI on phase I and II clinical trials as well as collaborative translational research in rheumatology.  She is committed to maintaining and developing new research activity in the Scleroderma Program.


October 3, 2009 - The Help Fight Scleroderma Foundation hosted its 3rd Annual Greatest 5K Ever fundraiser.

The race was held once again at Riverside Park in Grand Rapids, MI. The cloudy, cooler weather was perfect for the more than 300 runners who participated in the race. Following the race, all of the participants enjoyed live music and a hot breakfast with their friends and families. Proceeds will support scleroderma research at the University of Michigan. This year’s event raised $5,000!

The Help Fight Scleroderma Foundation was created by the Brennan Family as a means to raise awareness about scleroderma in western Michigan.

SAVE THE DATE: September 4, 2010 – 4th Annual Greatest 5K Ever!


September 2009 - Dr. Suparaporn Wangkaew returned to Thailand after completing a two year postdoctoral research fellowship in the Scleroderma Program.

Suparaporn Wangkaew, M.D. joined the University of Michigan Scleroderma Program in October, 2007. Her two year training program focused on clinical research in the field of scleroderma interstitial lung disease and pulmonary arterial hypertension. Dr. Wangkaew returned to Chiang Mai University in Thailand, where she is an Instructor in the Department of Internal Medicine.


June is Scleroderma Awareness Month in the United States and Canada.

June 15, 2009 - To increase awareness of scleroderma, the Ann Arbor News published an article written by scleroderma patient Marlene Weintraub who describes her personal battle with scleroderma. Read Marlene Weintraub's entire Ann Arbor News article "Other Voices:  Times difficult for research into debilitating scleroderma

“I have scleroderma. The excess collagen in my hands has caused my fingers to stiffen and harden. That plus other symptoms forced me to retire from teaching nearly a decade before I was ready to do so -- losing productivity, cherished interaction with young people, salary, and benefits.”

Marlene is a patient of Dr. Elena Schiopu Tishkowski. Dr. Tishkowski is a clinician and faculty member in the University of Michigan Scleroderma Program.


June 7, 2009 – ‘RC Dolner’s 1st Annual Exotic Car Tour’ fundraiser was hosted by RC Dolner LLC, a major New York-based construction company.

It was a sight to see! Over 170 exotic cars (Lamborghini, Lotus, Maserati, Bugatti, Bentley, Maybach, Porsche, Ferrari) gathered at the beautiful Suburban Golf Club in Union, New Jersey.  Engines roared as police cars escorted these magnificent cars through a winding, scenic route to the U.S. Military Academy at West Point, New York.  Drivers and guests then enjoyed a fabulous brunch at the Thayer Hotel located on the grounds of the Academy and overlooking the beautiful Hudson River.  Proceeds from the event topped $150,000, which was shared equally between the University of Michigan Linda Dolce Scleroderma Research Fund and the Children of Fallen Soldiers Relief Fund.  

Dr. James Seibold, Director of the University of Michigan Scleroderma Program, honored Anthony Dolce, Managing Partner of RC Dolner LLC and his family for their enduring support of scleroderma research.  Special thanks went to Bruno Guarini, Senior Vice President at RC Dolner LLC, whose vision, incredible efforts, and wonderful staff made the event a resounding success. 

Dr. Seibold also presented his long-time supporter, Betty Benedict of Washington Township, New Jersey, with a University of Michigan memento in appreciation for her contribution of $50,000 in cumulative gifts to scleroderma research.



Click to play video
Video courtesy of Alan Ledford of Ledford Studios.

Alan Ledford created this video as a tribute to his grandmother who died of scleroderma in 1999. He has received many prestigious video awards and is a film/video major at Grand Valley State University located near Grand Rapids, Michigan.


  Dr. Hou, Dr. Seibold and colleagues

October 2008 - A farewell reception was held to honor Yong Hou, M.D., who completed a two year postdoctoral research fellowship in clinical and basic research in the University of Michigan Scleroderma Program.  His laboratory research while in the Scleroderma Program focused on molecular mechanisms of blood vessel damage and growth in scleroderma skin.  Dr. Hou returned to his active rheumatology practice at Peking Union Medical College in Beijing, China where he is an Associate Professor in the Department of Rheumatology.


October 4, 2008 - The 2nd Annual Greatest 5K Ever fundraiser race was held at Riverside Park in Grand Rapids, MI and was hosted by the Help Fight Scleroderma Foundation.

 



  Scleroderma Program faculty & staff

September 2008 – The Scleroderma Program received an NIH (NIAMS) grant in collaboration with the University of Texas Medical School

This two-phase study, the Genome-Wide Association Study in Scleroderma, will identify the genetic clues to scleroderma by finding genes specific for scleroderma in 3000 patients with scleroderma in the United States and Canada.  The genetic information will help provide a map to the pathways that cause scleroderma. 


 Mr. and Mrs. Joseph Clancy

September 2008 – The Scleroderma Program received a second gift of $20,000 from The Clancy Family Foundation of Farmington Hills, Michigan for scleroderma research at the University of Michigan.

Last year the Scleroderma Program also received $20,000 from the Clancy Family Foundation, c/o Mr. and Mrs. Joseph Clancy.  These two generous gifts are helping to facilitate fast-paced, high risk pilot research projects.  We are grateful to the Clancy Family Foundation for its vision and partnership.


August 2008 – The Scleroderma Program received an award from the NIH.Sponsored by the NHLBI and led by Beth Moore, PhD. of the Division of Pulmonary Medicine at the University of Michigan, this project investigates fibrocytes (bone marrow derived fibroblast precursors) to determine the origin and development of scleroderma interstitial lung disease. The study will explore how the fibrocytes transit to injured lung and cause scarring.


March, 2008 – The University of Michigan Scleroderma Program’s faculty and staff offices moved to the nearby Domino’s Farms office complex in Ann Arbor, Michigan.

The faculty and staff of the University of Michigan Scleroderma Program outgrew their office space in the University of Michigan’s Taubman Center and moved to Domino’s Farms, a sprawling Ann Arbor office complex located a few miles northeast of the U-M Taubman Center.

Patient clinics remain in the Taubman Center.

Our address is:

University of Michigan Scleroderma Program
Domino’s Farms
24 Frank Lloyd Wright Drive
P.O. Box 481, Lobby M, Suite 2500
Ann Arbor, MI 48106

Office Phone: 734-763-3110
Toll Free: 866-628-9200


December 10, 2007 - A prestigious American College of Rheumatology Academic Reentry Award for $100,000 has been awarded to Kristine Phillips, MD, PhD, Clinical Assistant Professor in the University of Michigan Scleroderma Program.

Dr. Phillips will study the pathophysiology of systemic sclerosis (scleroderma) to determine how the immune system is disordered in scleroderma.


October, 2007 - The Clancy Family Foundation of Farmington Hills, Michigan gifts $20,000 for scleroderma research at the University of Michigan.

The Clancy Family Foundation of Farmington Hills, Michigan, c/o Mrs. and Mrs. Joseph Clancy, gifted $20,000 to support scleroderma research in the University of Michigan Scleroderma Program. This generous gift is helping to facilitate fast-paced, high risk pilot research projects. It is our hope that these studies will expand to eventually become fully funded NIH studies. Without this type of philanthropic support, high risk pilot studies would not be possible. We are grateful to the Clancy Family Foundation for its vision and partnership.


Deena Dolce O'Connor, Anthony Dolce, Dr. James Seibold, Peter Dolce

On September 27, 2007, Anthony Dolce, Stuart Koshner and Roger Chartouni, managing partners of RC Dolner LLC, a major New York-based construction company, hosted a gala dinner to benefit the University of Michigan Linda Dolce Scleroderma Research Fund.

The dinner was held at the elegant Columbus Citizens Foundation Townhouse in New York City.  The event welcomed over 90 guests and raised over $210,000 for scleroderma research at the University of Michigan.

The Linda Dolce Scleroderma Research Fund is named in honor of Anthony Dolce’s late wife.  The purpose of the fund is to advance the understanding of scleroderma disease mechanisms and develop new interventions and treatments that may one day lead to a cure for scleroderma.

Dr. James Seibold and RC Dolner managing partners, Anthony Dolce, Roger Chartouni, and Stuart Koshner

After a fabulous dinner and dessert in one of the elegant dining rooms of the Townhouse, Dr. James R. Seibold, Director of the University of Michigan Scleroderma Program, commented on Anthony Dolce’s tremendous support of scleroderma research and presented him with a certificate of appreciation for his passion and leadership. 

Dr. Seibold also acknowledged the remarkable program support of Anthony’s business partners Roger Chartouni and Stuart Koshner, as well as business associates, family and friends, including long-time supporters Bruce and Meryl Raiffe of New Jersey. 

The Raiffe family and friends

Thanks to all of the benefit dinner sponsors and benefactors, the event was an incredible success.  Without this continuing type of support, advances made possible through cutting-edge research could not be achieved.

 



TOKYO, JAPAN – May 18-20, 2007 – Dr. LeRoy Memorial International Workshop on Scleroderma.

Danto Dinner
Dr. Seibold in Tokyo

Dr. James R. Seibold attended a remarkably successful international workshop on scleroderma research honoring thememory of E. Carwile LeRoy – a father of modern scleroderma research and the originator of the “vascular hypothesis of pathogenesis”.  Attended by more than 200 scientists from Asia, North and South America and Europe, the Workshop featured more than 120 presentations of original research as well as comprehensive lectures of key areas of scientific progress.  Chaired by Professor Kazuhiko Takenara of Kanazawa Medical School, Dr. Seibold was an event co-chair and lectured on strategies for disease modification.



NEW YORK—February 23, 2007 – The University of Michigan Scleroderma Program received a $5,000 donation from CIBC World Markets Corp., through the firm’s CIBC World Markets Miracle Day campaign.

The University of Michigan Scleroderma Program was one of three hundred fifty-three Miracle Day charities approved by CIBC World Markets to receive a Miracle Day grant.  CIBC World Markets marked its 10th annual Miracle Day event on December 6, 2006, raising over $7.8 million for charities that have as one of their principal missions improving the health, education or welfare of children who are underserved, at risk or in need. On Miracle Day, 95% of CIBC World Markets' net commissions from trades made through the firm that day were donated to participating Miracle Day charities located throughout the United States.


On October 25, 2006, James R. Seibold, M.D. was installed as the first Marvin and Betty Danto Research Professor of Connective Tissue Research at the University of Michigan Medical School.  A dinner and celebration were held to commemorate the event and to honor the generosity of Marvin and Betty Danto at the Franklin Hills Country Club in Franklin, Michigan.
Danto Dinner
The Dantos and Dr. James Seibold

The Dantos recently provided the University of Michigan Health System with two gifts.  The first gift established the Marvin and Betty Danto Research Professorship in Connective Tissue Research and a fund for research on scleroderma and related conditions.  The second gift will support construction of the Cardiovascular Center (CVC), which will open in mid-2007.  The University will name the new building’s auditorium, The Marvin and Betty Danto Auditorium, in recognition of the Dantos’ generous support. (See Marvin & Betty Danto)

Danto Dinner
Marvin Danto and Dr. Seibold share a laugh

The evening program was commenced by Robert P. Kelch, M.D., University of Michigan Executive Vice President for Medical Affairs and Chief Executive Officer of the University of Michigan Health System, and included remarks from Alan E. Schwartz, a longtime friend of the Dantos, Jonathan Rye, Chairman of Greenfield Commercial Credit and ardent supporter of Dr. James Seibold, and Dr. Kim Eagle, the Albion Walter Hewlett Professor of Internal Medicine and Co-Director of the CVC.  Medallions were presented to Marvin and Betty Danto in recognition of their generous support, and to Dr. Seibold to commemorate his installation as the first Marvin and Betty Danto Research Professor.  The evening concluded with a celebration of Mr. Marvin Danto’s 90th birthday.


On September 22, 2006, the Scleroderma Research Foundation of San Francisco made a $100,000 gift to the University of Michigan Scleroderma Research Fund.  This generous gift permits funding for pilot basic science investigations into the pathogenesis of scleroderma.  Funding will support University of Michigan faculty Dr. Vibha Lama, Assistant Professor of Internal Medicine in the Division of Pulmonary and Critical Care, and Dr. David Pinsky, J. Griswold Ruth M.D. & Margery Hopkins Ruth Professor of Internal Medicine and Chief, Division of Cardiovascular Medicine, in their studies of mesenchymal stem cell precursors and their putative role in scleroderma lung disease.  Dr. Yong Hou, Research Fellow in the University of Michigan Scleroderma Program and Dr. Alisa Koch, Frederick G.L. Huetwell and William D. Robinson, M.D. Professor of Rheumatology, will focus research studies on the mechanisms of scleroderma blood vessel injury.
Anthony Dolce, Dr. James R. Seibold, Bruce Raiffe

On September 19, 2006, Bruce and Meryl Raiffe of Warren, New Jersey hosted “Drive to Ride”, an 18 hole, hole-in-one tournament, to raise funds for the University of Michigan Scleroderma Program.  This is the second year the Raiffes have hosted this fabulous event.  Bruce is CEO of Gund Inc., and Meryl is President of Allbook Inc.  The Raiffes are leaders of various New Jersey-based fundraising activities and strong supporters of James R. Seibold, M.D., Professor of Internal Medicine, Marvin & Betty Danto Research Professor, and Director of the Scleroderma Program at the University of Michigan. The Scleroderma Program and the University of Michigan Medical School extends special thanks to Bruce and Meryl Raiffe for their tireless efforts in hosting this extremely successful event.

Special thanks are also due to Anthony Dolce, President of R.C. Dolner, LLC, a major New York based construction company.  Anthony is a passionate supporter of Dr. Seibold and his research program.  Through their participation in Drive to Ride, Anthony, his family, and many of his friends and colleagues helped ensure Drive to Ride's financial success.

Hole-in-one Prizes: A Bentley and Rolls Royce!

The tournament was once again held at The Hamilton Farm Golf Club ("HFGC") in Gladstone, New Jersey -- the only 18 hole USGA par three rated course in the United States.  Prior to the tournament, some participants relaxed in their well appointed private rooms in the HFGC Mansion.

The tournament was descriptively named "Drive to Ride" because a brand new car was the prize for each participant to first score a hole-in-one on each of the 18 holes -- 18 brand new cars in all, including a Bentley, a Rolls Royce, Porsche, Infiniti, BMW, and Audi – more than $1,000,000 in new cars!  

A separate closest to the pin contest was also held with a brand new Mustang Convertible awarded to the player hitting the ball over the water and closest to the pin on the 9th hole.

Another tournament highlight was cocktails and a casual dinner for the participants, with dinner being prepared by HFGC's Chef Bruno Gubelmann.

The 2006 Drive to Ride tournament raised over $250,000 for scleroderma research at the University of Michigan.  We are very pleased to announce that the Raiffes and Anthony Dolce have agreed to host another fundraiser next year to benefit scleroderma research at the University of Michigan.


On June 22, 2006, The New England Journal of Medicine published "Cyclophosphamide versus Placebo in Scleroderma Lung Disease" (see For Health Care Professionals/Recent Publications). This large multicenter U.S. study was supported by the National Institutes of Health and demonstrated modest benefit of cyclophosphamide for pulmonary function testing, skin thickening and several measures of quality of life. Dr. Seibold had served as Principal Investigator at the University of Medicine and Dentistry of New Jersey.
In May 2006, James R. Seibold, M.D. was appointed by the Board of Regents of the University of Michigan as the Marvin and Betty Danto Research Professor of Connective Tissue Research. This research professorship was established in April 2006, and made possible through a generous gift agreement from The Marvin I. and Betty J. Danto Foundation. This professorship will support research efforts in scleroderma and related conditions. Dr. Seibold is also Professor in the Department of Internal Medicine and Director of the University of Michigan Scleroderma Program.
Elena Schiopu, MD, Clinical Lecturer in the Scleroderma Program at the University of Michigan, has been elected to the Board of Directors of the Scleroderma Foundation – Michigan Chapter. This is emblematic of the Program’s desire to foster collaboration. Dr. Schiopu will work closely with the Scleroderma Foundation in the areas of patient education, treatment, research and improving public awareness.
The Scleroderma Program received a grant from National Institute of Allergy and Infectious Disease: This award of $887,731 funds participation in the SCOT trial “Scleroderma: Cyclophosphamide or Transplantation.” This multicenter study will study 226 patients with severe early diffuse scleroderma. The University of Michigan will serve as one of seven national stem cell transplantation hubs. For more information about SCOT, please visit: http://www.sclerodermatrial.org
James R. Seibold, M.D., delivered Plenary Lectures on “Advances in Scleroderma Lung Disease” at the 2006 Annual Meeting of the Chinese Rheumatology Association on May 19 in Nanjing and to the 2006 Annual Meeting of the Australian Rheumatology Association on May 22 in Perth. Dr. Seibold also gave lectures on "Scleroderma Lung Involvement - Where Are We in 2006?" and "Digital Ulcers - Visible Evidence of Vasculopathy in Scleroderma" at the European League Against Rheumatism (EULAR) Annual Meeting in Amsterdam, June 21-22. EULAR is the organization which represents the patient, health professional and scientific societies of rheumatology of all the European nations.
RAPIDS-2 Trial Positive: This international study of 188 patients demonstrated that bosentan, a novel antagonist of endothelin, was effective in preventing digital tip ulcerations secondary to scleroderma. Dr. Seibold served as International Principal Investigator. For more information, please visit http://www.primezone.com
September 20, 2005 “Drive to Ride” Golf Event for the University of Michigan Scleroderma Program: This important fundraising activity was led by Bruce and Meryl Raiffe of New Jersey and held at the prestigious Hamilton Farm Golf Club in Gladstone, New Jersey – one of the world’s most exclusive venues for golf. The 2005 inaugural event raised more than $300,000 for the Scleroderma Program at the University of Michigan.

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