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NEWSLETTER

Summer, 2017

2nd GLOBAL CONFERENCE ON MYOSITIS

Medical Conference Group Photo

Over 100 healthcare professionals attended the JM pre-conference workshop hosted by Cure JM.

On May 5-8, 2017, over 300 Myositis researchers from around the world came together in Potomac, MD for the 2nd Global Conference on Myositis (GCOM), sponsored in part by Cure JM Foundation. The goal of this four-day conference was to bring together Myositis researchers to advance the field of Myositis research through international collaboration.

On Friday, May 5, Cure JM hosted a workshop on Juvenile Myositis, with moderators Dr. Annett van Royen-Kerkhof and Cure JM Medical Advisory Board Member, Dr. Susan Kim.

Over 100 healthcare professionals attended the workshop to hear talks on important new developments in areas of research pertaining to juvenile myositis including An Update on Pathogenesis of Juvenile Dermatomyositis, Muscle Biopsies and Biomarkers and What They Tell Us About Juvenile Myositis Prognosis, The Interferonopathies and Their Relationship to JDM, and Lessons from the Non-Inflammatory Hereditable Myopathies.

On Saturday, May 6, Cure JM Executive Director James Minow and Cure JM Medical Advisory Board Members, Dr. Lisa Rider and Dr. Adam Huber, chaired a special Cure JM sponsored session where Cure JM Medical Advisory Board Members - and JM thought leaders - Dr. Lucy Wedderburn, Dr. Lauren Pachman, Dr. Ann Reed, and Dr. Brian Feldman, presented their perspectives on the current state and future priorities for research in JM. They all underscored the urgent need for increased collaboration across disciplines, centers, and borders.

Cure JM President Mitali Dave then presented the top 20 research priorities of Cure JM families with finding a cure, developing better treatments with less side effects, and identifying triggers for flare topping the list.

The audience of ˜75 researchers and Cure JM parents split up to brainstorm priorities for four areas of research: basic, clinical, translational, and underlying methodologies / resources.

“Together, researchers and patient families identified priorities for future research for the JM research community. I am thrilled that the research priorities took into account what matters most to Cure JM families,” says Annie Mitchell, Cure JM Board of Directors and member of the GCOM Steering Committee.

View Cure JM GCOM 2017 Highlights


Dr. Lisa Rider Awarded Cure JM’s Lifetime Achievement in Research Award

Lisa G. Rider, M.D.

In February, Rhonda McKeever, Chairman of Cure JM’s Board of Directors, presented Dr. Lisa Rider with Cure JM’s Lifetime Achievement in Research Award.

The award was presented in front of over 100 JM families at Cure JM’s National Family Educational Conference in Austin, Texas.

“Advancing the field of juvenile myositis takes a brilliant scientific mind, a passion for juvenile myositis research, and a devotion to training young researchers,” said Shari Hume. “The Lifetime Achievement in Research Award celebrates a scientific researcher who has dedicated 15 or more years to JM research, and made significant advances in the field of juvenile myositis research. Dr. Rider’s devotion to her patients, families, and JM research make her a true inspiration.

Dr. Rider’s many accomplishments have directly helped improve the lives of JM patients and offer hope to so many families. Some of her many accomplishments include:

  • her development of new response criteria used to determine clinical improvement in treatment trials for juvenile and adult myositis
  • her work to define subgroups of patients based on myositis autoantibodies, and their associated clinical features and outcomes and co-leading the International Myositis Assessment and Clinical Studies Group (IMACS) for the past 20 years, which has been a leader in international development of validated assessments

Learn More


Physician Making a Difference

Kaveh Ardalan, M.D. with Clara

Clara was diagnosed with JDM last year at the age of five. Despite all of the ups and downs of being diagnosed with a rare disease, her family has found hope through their involvement with Cure JM’s Chicago Chapter and the support of Kaveh Ardalan, M.D., Attending Physician, Rheumatology; Instructor in Pediatrics-Rheumatology, Northwestern University Feinberg School of Medicine and a part of our Cure JM Center of Excellence.

“None of us like this disease at all but the community and joy in the midst of it somehow makes it all seem OK,” says Clara’s mom Lynn.

Dr. Ardalan is seen here with Clara wearing his own “Cure for Clara” hat. Clara and her family wore their hats to the recent Cure JM “Walk Strong to Cure JM” in Chicago, IL where 1,300 walkers came together to enjoy a day of food and fun, while walking to raise funds for JM research.

For more information on Cure JM's Walk or Regional Chapter Program, contact our Cure JM Medical Network Program Manager at physicians@curejm.org


Juvenile Myositis Update From CARRA’s Annual Meeting

Cure JM works in close collaboration with CARRA (Childhood Arthritis and Rheumatology Research Alliance), a North American group of pediatric rheumatologists and other health professionals whose mission is to conduct collaborative research to prevent, treat and cure pediatric rheumatic diseases.

On May 15-17, 2017 in Houston, TX, CARRA held its annual scientific meeting. CARRA’s JDM Committee is led by Cure JM Medical Advisory Board Members, Dr. Adam Huber (CARRA JDM Committee Chair) and Dr. Susan Kim (CARRA JDM Committee Vice-Chair). The JDM committee held four working sessions:

  1. Priorities and the Future for JDM and CARRA
  2. JDM Dermatology Collaboration
  3. Use of Biologics in JDM
  4. Calcinosis in JDM

In addition, CARRA and Cure JM discussed the future roll-out of CARRA's JDM registry and potential biobank.

CARRA’s Research Prioritization Results


SURVEY RESULTS: What research priorities matter most to JM families?

Over the last year, Cure JM families have been participating in an important effort to help determine what research matters most to Cure JM Families. Through a CARRA-funded fellowship, Dr. Colleen Correll of the University of Minnesota, led this project for PARTNERS (a patient-powered pediatric rheumatology research network that consists of patient families, Cure JM, the CARRA network, the Lupus Foundation of America, the Arthritis Foundation, and a quality improvement network called PR-COIN). Dr. Correll collected parent and patient input through a series of surveys and a Parent Focus Group at Cure JM’s Annual Family Conference in February 2017.

Through these efforts, Dr. Correll identified 20 research themes of interest to Cure JM families. In May, over 300 parents, patients, and caregivers helped prioritize these research themes.

Through these surveys, Cure JM families reported that their top three research priorities are:

  1. A Cure
  2. New Treatments with Fewer Side Effects
  3. Predictors and Triggers for a Flare

View a presentation of the survey results


Cure JM Grants & Future Funding Opportunities

Cure JM funded 6 research grants earlier this year and will be awarding a new round of 2-4 grants up to $75,000 per year for up to 2 years in October. Cure JM is grateful to CARRA's JDM Committee that reviews and rates the grant proposals based on scientific impact prior to Cure JM’s selection of grantees.

The deadline for grant submission has passed, but we will provide more information about future funding opportunities, including a fellowship, later this year.

CURE JM FELLOWSHIP AWARD in JUVENILE MYOSITIS

The purpose of the fellowship award is :
To support the training of physicians in pediatric rheumatology to gain clinical and research expertise in Juvenile Myositis.

Award Amount:
$60,000/year for 2 years

Eligibility & Requirements:

  • MD and completed a pediatric residency program
  • 1st year fellow in pediatric rheumatology at a center that trains physicians in the specialty of Juvenile Myositis.
  • A two-year award for the 2nd and 3rd year of a pediatric rheumatology training program.
  • The fellowship will be awarded to doctors in an academic center in the United States that has an established clinical and research program in Juvenile Myositis and
  • Participation in clinic seeing Juvenile Myositis patients under the supervision of a Pediatric Rheumatologists experienced with Juvenile Myositis.
  • Completion of a research project (basic science, clinical or translational) pertaining to JM within the two-year time frame of the fellowship award.
  • Must be able to devote at least 50% of their time to research.

Learn more


CRITICAL RESEARCH STUDIES NEED PATIENTS

You can help advance science and benefit your patients by referring them to an appropriate clinical trial or research study. The following clinical trials and research studies are currently recruiting patients:

  • AID Clinical Trial: Abatacept In Juvenile Dermatomyositis
  • Experimental Treatment Study: H.P. Acthar Gel (Cure JM Foundation)
  • Myorisk Study, Currently enrolling patients with lung disease or who have tested positive for Jo1 or other anti-synthetase autoantibodies.
  • Pediatric Identical twins (one who has JDM, one who does not)
  • Premature Atherosclerosis in JDM
  • Twin/Sibling Study

For contact information and to learn more about these important studies, please click here.


Announcing Two New Members of Cure JM’s Medical Advisory Board

The Cure JM Medical Advisory Board (MAB) is comprised of internationally renowned researchers and clinicians in the field of Juvenile Myositis. The MAB provides insight, scientific direction, and expertise to Cure JM’s Board of Directors and Staff. The MAB also consults with clinicians who request guidance in the treatment of a patient.

Cure JM is honored to announce two new additions to the Medical Advisory Board:

Dr. Wedderburn

Lucy Wedderburn, PhD, MRCP
Professor in Pediatric Rheumatology at University College London (UCL) Institute of Child Health, and a Consultant at Great Ormond Street Hospital (GOSH)

Dr. Nagaraju

Kanneboyina Nagaraju, DVM, MVSc, PhD
Founding Chair and Professor, Pharmaceutical Sciences, Binghamton University, State University of New York


The other Cure JM Medical Advisory Board members are:

  • Lisa G. Rider, M.D.
    Chairman, Cure JM Foundation Medical Advisory Board, Deputy Chief of the Environmental Autoimmunity Group, National Institute of Environmental Health Sciences, National Institutes of Health

  • Ann M. Reed, M.D.
    Chair of the Department of Pediatrics, Duke University School of Medicine

  • Brian Feldman, M.D., MSc, FRCPC
    Professor of Pediatrics & Medicine, Faculty of Medicine, and the DLSPH University of Toronto Head, Division of Rheumatology SickKids

  • Adam Huber, M.D.
    Pediatric Rheumatologist and Professor of Pediatrics at the IWK Health Centre and Dalhousie University in Halifax, Nova Scotia, Canada

  • Susan Kim, M.D., MMSc
    Pediatric Rheumatologist and Associate Clinical Professor of Pediatrics, University of California, San Francisco

Learn more

Cure JM Logo

Cure JM Foundation is the leading global nonprofit organization funding Juvenile Myositis research. Cure JM has invested $11 million and supported over 140 research studies to accelerate the pace of research. Our mission is to find a cure and better treatments for Juvenile Myositis and improve the lives of families affected by JM.