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Research
October 2009--Research Grants Extended to Two Centers
Your fundraising efforts have allowed us to extend two grants paying for research into better treatments and an eventual cure for JM. We recently gave the Cure JM Program of Excellence in JM Research at Children’s Memorial Research Center in Chicago a new grant to help cover another year of work while the JM research and treatment center at The George Washington University in Washington, D.C., received a grant for an additional year.
Research Update: Cure JM Program of Excellence in JM Research at Children’s Memorial Research Center in Chicago
The following is a research update from Dr. Lauren M. Pachman, MD at the Cure JM Program of Excellence in JM Research.
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October 21, 2009
Rhonda McKeever
Chairman
Cure JM Foundation
3223 Lake Ave, Unit 15C #393
Wilmette, IL 60091
Dear Rhonda:
Please accept my sincere thanks for Cure JM’s transformational support of the juvenile myositis research program at Children’s Memorial. I am humbled by the generosity of Cure JM and most grateful for your support.
Cure JM’s philanthropic investment helps us integrate cutting-edge research,
top-level scientists, and advanced technologies to accelerate our understanding
of juvenile myositis. With a talented team in the clinic and laboratory, we have great potential to better understand the cause of juvenile myositis, and move toward a future where no child has to struggle with this disease.
Thank you again for your belief in our work. It was wonderful to see you, and
other Cure JM leaders, at the Young Adults with JM: Transitioning Your Care workshop.
Sincerely,
Lauren M. Pachman, M.D.
Professor of Pediatrics
Division of Pediatric Rheumatology
Northwestern University, Feinberg School of Medicine
Co-Director, Center of Excellence in Clinical Immunology
Head, Cure JM Program of Excellence in Juvenile Myositis Research |
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(Click Arrows Below to Flip the Page)
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Research Update: George Washington University Myositis Center
The following is a research update from Dr. James D. Katz MD, FACP, FACR at the GW Myositis Center:
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The GW Myositis Center
Division of Rheumatology
The George Washington University
2150 Pennsylvania Avenue, NW Ste 3-416
Washington, DC 20037
http://www.gwdocs.com/1200000177214.html
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The division of rheumatology of the George Washington University hosts a myositis clinic for both adults and children (ages 7 and above). The GW Myositis Center has been created with the help of a generous grant from CureJM, a nonprofit organization dedicated to finding a cure for juvenile-onset myositis. The center provides clinical consultation to individuals with established or suspected idiopathic inflammatory
muscle disorders; patients should be under the care of, and referred by, a primary physician for their myositis.
The Center also has a research mission. Cure JM’s generous support has enabled inclusion of a full time researcher, Dr. Gulnara Mamyrova, who has special interest and training in juvenile myositis, and a part time pediatric rheumatologist, Dr. Olcay Jones., chief of pediatric rheumatology at Walter Reed Army Medical Center.
In addition, research collaboration has been established with the Environmental Autoimmunity Group, NIEHS, from the National Institutes of Health that bolsters all aspects of the Center's mandate. Dr. Rider is a pediatric rheumatologist from Environmental Autoimmunity Group at NIEHS/NIH, is a consulting attending physician of the Center. Dr. Rider is a world-known expert in juvenile myositis with more than 16 years experience in the care and research of patients with juvenile myositis, who has spearheaded several of the largest national and international collaborative myositis studies performed. Results of these studies have been summarized in more than 100 publications and appeared in national and international peer reviewed journals worldwide.
The center also has a close affiliation with several specialists:
- Dr. Alison Ehrlich, Department of Dermatology (expert in systemic rheumatic diseases and issues of photosensitivity)
- Dr. Robert Jones, Department of Pathology (expert in muscle biopsy review)
- Dr. Kathleen Brindle, Department of Radiology (expert in musculoskeletal radiology, including MRI)
- Dr. Patience White, Department of Rheumatology, advisor to the clinic on issues of transition and career/vocational counseling/planning research
Trainees in rheumatology (fellows) are actively engaged in the clinic resulting in advanced understanding of these rare diseases as preparation for future clinical careers in rheumatology.
For more information about the GW Myositis Center, or to refer a patient, please contact Dr. Mamyrova at phone (202) 741-3069; fax: (202) 741-2490; email: gmamyrova@mfa.gwu.edu
Research Projects for the GWU Myositis Center:
Our first project “Health Care Transitioning in Pediatric Myositis Patients”
This is an IRB-approved survey for parents and children with myositis designed to help understand how involved children with myositis feel in the process of transitioning their care to an adult medicine provider.
The following links are for Parents to log on: http://www.surveymonkey.com/s.aspx?sm=y_2fU_2fJqgB57zKdwdA_2fAH2pA_3d_3d
and for Children to log on:
http://www.surveymonkey.com/s.aspx?sm=XZJKss8Rr3Y0dvILqMgjpA_3d_3d
We will post more new projects soon…. |
The GW Myositis Center Team
Olcay Jones, MD (pediatric rheumatologist);
Gulnara Mamyrova, MD, PhD (researcher);
James D. Katz, MD (rheumatologist - director
of clinic); Lisa Rider, MD (pediatric rheumatologist
from the NIH); Olena Guzhva,
MD (fellow trainee in rheumatology); Geeta
Nayyar, MD (fellow trainee in rheumatology
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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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