Research

Through the generosity and hard work of the JM community, Cure JM Foundation has been able to approve a $ 1 million, three year JM research grant! This grant will go to support a "Program of Excellence in JM Research" at Children's Memorial Research Center in Chicago, led by Dr. Lauren Pachman. A special thank you to all of you who so generously donated to this effort. This was all accomplished by the JM community working together and you are all to be congratulated!
 

Program of Excellence For JM Research:
An Update from Dr. Pachman

     

Dear Members and Friends of Cure JM,

It is a pleasure to share with you the critical impact that your first 7 months of support to this center has made on personnel, recruitment, and productivity. First of all, we were able to expand our team in both the epidemiology and the laboratory based areas. With your support supplementing other resources, we were able to recruit three new people for our team.

1. Faculty

The epidemiology team studies of the distribution of Juvenile Myositis in populations and the factors that influence the occurrence of the disease. Our Project Manager, Maria Amoruso (MPH) develops protocols, designs studies and evaluates their outcomes while working hand-in-hand with the institutional review board to keep those studies involving human subjects strictly compliant with federal guidelines. Gabrielle Morgan (MA) is the Project Facilitator whose focus is the research project, "Quality of Life in JDM, genetic and social interactions." She also handles the data entry and clinical organization.

In the area of hands-on science, our laboratory team is lead by Dan Zhao(MD, PhD), currently finishing second year of post-doctoral fellowship. He will transition to a Research Assistant Professor in September, paid for by Cure JM. With a background in calcium absorption, he is now focusing his expertise on the hows and whys of pathologic calcification development. He is being assisted in this research by Annette Urganus (BS), our newest research associate.

Two other areas of concentration involve molecular biology and immunobiology. The validations of our gene expression profile data is being investigated by Sheela Shrestha (MS), while Nicholas Geraci (MS) is delving into the molecular biology of the immune response in newly diagnosed JDM patients.

Trainees: We have a lot of students involved in understanding JDM! In the summer of 2007 we had two additional students, one whose salary came from the Arthritis Foundation, Greater Illinois Chapter, (Kenley Barrett), and the other (Jessica Kim), a student who received the Wellesley City Scholars Summer Scholarship award. Another study, by a third year medical student, Brock Daniels (MPH) is assessing indicators of disease activity in untreated children with JDM. Our first year Pediatric Rheumatology Fellow, Maria Ibbara, MD, will study calcifications in JDM, while a Pediatric Resident, Josaphine Scalici, MD, has selected a JDM related topic for her senior project.

2. Equipment: Micro Cat-Scan for Calcifications:

This desk top model arrived in our lab on June 19, 2007 (the order was placed to Belgium in January). This highly accurate machine will localize calcifications and give very accurate readings of their "volume" or "mass." The final cost of this machine was over $95,000 and was paid for by Cure JM. We had wanted to get this sensitive instrument for 2 years!

3. Publications since January, 2007: 4 manuscripts published or in press, 2 more are under review

  1. Rouster-Stevens KA, Langman CB, Price HE, Seshadri R, Shore RM, Abbott K, Pachman LM. Receptor activator of nuclear factor-�B ligand/osteoprotegerin and bone mineral density in untreated children with juvenile dermatomyositis. Arthritis Rheumatism 56, (3): 977-983, 2007.
    This manuscript shows that children with longer duration of untreated JDM have lower bone density, reflected by circulating markers of bone growth.
     

  2. Zhao D, Fedczyna TO, McVicker V, Caliendo J, Li H, Pachman LM: Apoptosis in the Skeletal Muscle of Untreated Children with Juvenile Dermatomyositis: Impact of Duration of Untreated Disease, Clinical Immunology, doi:10.1016/jclin 2007.06.011
    This study shows that the mode of damage to muscle changes over time in children prior to therapy, and shows that there are several kinds of cell death in the muscle.
     

  3. Christen-Zäch, S; Seshadri, R; Sundberg, J, Paller, AS, Pachman, LM. Pathological nailfold capillaroscopy changes in Juvenile Dermatomyositis: association with duration of untreated disease, skin involvement over 36 months and a non-unicyclic disease course. Arthritis & Rheumatism (in press) 2007.
    We found that 40% of children repair their nailfold capillaries at 36 months after start of therapy, and that continued skin involvement is associated with persistent nailfold capillary damage.
     

  4. Rouster-Stevens KA, Gursahaney A, Ngai K-L, Daru JA, Pachman LM. Pharmacokinetic study of prednisolone compared to intravenous methylprednisolone in patients with Juvenile Dermatomyositis. Arthritis Care and Research (In press) 2008.
    This study shows that the vasculitis of JDM, reflected by nailfold capillary dropout, impairs absorption of prednisone given by mouth. This provides the rationale for the intravenous route for corticosteroid administration.

4. "Parent Advocate Interactions"

We were delighted to have Jacque DenUyl join us as a Parentwise volunteer in our JDM clinic, which the parents greatly appreciate. This is the first outpatient clinic at Children’s Memorial Hospital to have such attention..

Lauren M. Pachman, M.D.
Professor of Pediatrics
Northwestern University
Feinberg School of Medicine
Dir., Molec & Cell Pathobiology
Childrens Memorial Research Center

Earlier Grants

In October 2003 the Cure JM Foundation began its mission to do whatever is necessary to help find a cure for juvenile myositis. Within a year, through the fundraising efforts of the JM community and many generous contributions, we were able to grant two important research fellowships.

In June, 2004, Cure JM awarded a fellowship to Dr. Gulnara Mamyrova, M.D., Ph.D, to complete the Childhood Myositis Heterogeneity Study and projects related to analysis of data from this registry study. This study is being conducted under the guidance of Dr. Lisa Rider, M.D. by the Environmental Autoimmunity Group at NIEHS, National Institutes of Health.  Deputy Chief Dr. Rider and Chief Dr. Fred Miller, M.D., Ph.D. are the principal investigators of this study. Dr. Mamyrova’s fellowship funding began on November 25, 2004 and will continue until November 21, 2007. The total amount of this grant is $147,660.

Dr. Mamyrova has presented her work from this study at a number of national and regional meetings, including the American College of Rheumatology, the NIH Research Festival, and DC Rheumatism Society. She received recognition for her work on this study from the DC Rheumatism Society as a Poster Award Winner at their Fellows Forum.

In July, 2004, Cure JM Foundation also awarded a fellowship to Dr. Kelly Rouster-Stevens, M.D., Pharm. D., for the “Untreated Children with Juvenile Dermatomyositis: Impact of Serologic and Genetic Factors on Bone Mineral Density”. This study is being conducted at Children’s Memorial Research Center in Chicago, and is supervised by Dr. Lauren Pachman, M.D. This fellowship award began July 1, 2004 and will continue through June 30, 2006 for a total of $127,965.

We would like to thank all those who helped make this possible and who are continuing to raise awareness and funds for further JDM research.

Research Subjects Needed

Twins/Siblings Study
The National Institutes of Health is conducting pioneering research into the genetic and environmental risk factors that may result in an autoimmune disease. Specifically, they are seeking subjects who have been diagnosed within the last 4 years and who have a twin or sibling of the same gender (within four years of age) without an autoimmune disease. This is a great opportunity for JM sufferers to take an active role in the fight against JM. Click here for more information.

Other Research Studies

Calcinosis in Juvenile Dermatomyositis: Pathogenesis and Current Therapies
www.pedrheumonlinejournal.org/April/calinosis.html

Clinical Outcomes In JDM
(requires site registration, but registration is free)
www.medscape.com/viewarticle/444390

Clinical Trials
www.clinicaltrials.gov/ct/gui/action/SearchAction?term=Connective+Tissue+Disorders

Dermatomyositis
www.emedicine.com/derm/topic98.htm
www.thedoctorsdoctor.com/diseases/dermatomyositis.htm

Guidelines for safe use of IVIG
www.rheumatology.hss.edu/pat/specInfo/sideEffects/ivig_use.asp

Juvenile Dermatomyositis Presenting With Rash Alone -- Eisenstein et al. 100 (3): 391 -- Pediatrics
pediatrics.aappublications.org/cgi/content/full/100/3/391?maxtoshow=&HI

Juvenile dermatomyositis associated with lipodystrophy
www.ijdvl.com/article.asp?issn=0378-6323;year=2003;volume=69;issue=5;
spage=343;epage=344


Lipodystrophy in JDM
www.jrheum.com/abstracts/abstracts01/610.html

Association of TNFa-308A Allele
www.current-reports.com/article_frame.cfm?PubID=RR03-5-1-03&Type=Abstract&KeyWords=Allele&HitNum=91

Vitamin D Lowers Inflammation
www.mercola.com/2004/feb/28/vitamin_d.htm

   
 

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